. . . if I only had a Brain.

Roll Your Leg Over ~ by Oscar Brand

2010-07-01T14:28:00.005-04:00

If you want to add this song to your repertoire you need to start with sheet music, or at least this recording of Oscar Brand singing "Roll Your Leg Over" from his album Bawdy Songs and Backroom Ballads Vol 1 1955.

Thank you to rumandoldspice at YouTube.

This is the album that inspired our version of the song. When Laura and I started The Bawdy Balladeers in the '80s, we changed the song to a woman's point of view changing laddies to lassies. I thought "the man in the moon" wasn't funny. I came up with "it's better that way" and we gave it "the clap".

Countless Renaissance Faire groups and Pub Sings have sung our chorus ever since.

Please give credit to the originators of any music and lyrics or the recording you used to the best of your ability. If you are researching songs for yourself or a group, be creative. Or at least change the arrangement and how the song is introduced.

Perhaps one day, another budding musician will honor you in the same way.

Goodness Gracious

2010-03-21T09:51:00.005-04:00

My last real entry here was back in June 2009 after our anniversary. Shame on me. Y’all must have thought I didn’t love ya, or was in the grave.

Nope.

In fact, just two days ago my oncologist informed me my MRI was perfect. No changes since the end of my radiation and oral chemo in November of 2007. None. Zip. Nada. After two and a half years of MRIs every two months I have graduated to every three months. This really is huge to me. I had asked him if I could decrease the frequency last year, and he gave me reasons to stay on schedule which I agreed to. Finally he is feels he can loosen the reins a bit and my head won’t explode.

::fireworks::

In other news, remember the pink brace? It just wasn’t working out. I kept falling, and I couldn’t get up because the toe of the thing would not bend at all. I finally went to a different style of brace and could get up- no problem. But I kept falling.

In August I had a really bad fall.

The stupid nurse in me screamed for 45 minutes then calmed down, crawled to the couch and got up to call Bobby. Then I talked him into going to an urgent care center. They mis-diagnosed me, even though I vomited. We drove straight to our local hospital. The urgent care guy didn’t believe me when I told him my insurance company nurse said to do that.

Sheesh.

Cat Scan showed hematomas, I injured my right kidney and liver. The ER doctor calmly says “We don’t have the constant monitoring in case you need emergency surgery, so we’re sending you to Shock Trauma at University of Maryland by Ambulance. You can imagine our faces. I asked to go to Hopkins instead and they arranged that. After four days, and a brief stay in step down, I went home on good drugs. I told Bobby to never listen to me when I’m irrational again. As long as I didn’t move, I was pretty good on the drugs. Then I realized an amazing thing. My arms didn’t hurt. My arms and my sides and my face and my skin didn’t hurt. For nearly twenty years I knew I was dealing with chronic pain, and massages gave me some relief. I always said it was the absence of pain. But I never knew how much I had until I had the narcotics for the fall. After several weeks, I began to wean off the pain meds. It was a hard decision. No wonder there are addicts. The anticipation of the return of my pain was so depressing I cried. It hurt less, then only really bad when lying down, from pressure on my liver and kidney I guess. But the other pain came back as predicted. Then finally . . . back to yoga for pain control. And so I’m walking with two sticks now. It was hard to swallow, but the physical therapist was right. I’m much more stable and I haven’t fallen since.

Enough of that. We haven’t traveled much since the two big trips last year. We went to Rhinebeck New York for the fiber festival in the fall and recently to Philadelphia for the Flower show. Both trips were short but sweet. Bobby has a long weekend starting Friday and we may head to a NASCAR race in Virginia for another short getaway if the weather is good and the tickets suit us. Oh! Nah, never mind. I’m not going into the snowicane, I’m looking at the crocus and daffodils in my garden.
That’s the highlights. Sorry for the long absence here.

I’ll try to keep it alive better :-p

Dear Laura,

2009-07-13T14:37:00.003-04:00

Dammit woman, no current contact info for you. Have called the one I have repeatedly to no avail. Your livejournal died. Have sent notice to whimseywoman(all I had that was current). Please do the calling. Number hasn't changed or I'm in the book.

Bonnie

10 Years of Wedded Bliss

2009-06-13T18:11:00.005-04:00

A few weeks ago he woke me up and said we’re going – in 9 hours. He covered every step, every hotel, every activity, and even had rain contingencies for twelve days. He hijacked our hotel email confirmation address by guessing my password hint so I wouldn’t get notified. He arranged cat coverage with my neighbor and sister (who patiently listened to me wistfully wonder why he didn’t seem up for a concert or at least a movie. Was he feeling run down? I’ve been wanting him to get a physical). He did all the laundry. He turned the GPS away from me so every day was a surprise.

After we left Maryland:

NHRA drag racing at Bristol Motor Speedway in Bristol, TN - I couldn't figure out why signs said x-miles to Bristol. There's no NASCAR race that weekend in Bristol! But as we ate in FATZ (fried green tomatoes on stone ground grits mmmmm) he handed me tickets to the drag races. We saw all the big time drivers from TV up close in the pits. They don't hide like in NASCAR. Skipped the autographs, there were so many drivers I was content with great pictures. Very cool.

Roller Derby at the Shriners in Atlanta, GA – We laughed, we cheered, we had a ball. The funny names for the players and the teams were a scream. My fave team was the Apocalipstix, while the husband was all over the Sake Tuyas. What a hoot.

Tradin’ Paint in Marietta, GA – A wonderful play about an auto parts clerk with a crazy(as in mentally ill) NASCAR lovin’ boyfriend, who finds her true destiny. I loved the scene where she’s hit with debris and during brain surgery dreams of her race-fan gay black English professor, the father she blames for her poor self esteem, and the ghost of Dale Earnhardt.

Walt Disney World in Orlando, Florida – The site of most of our original honeymoon. It rained the whole time. The Lion King show stopped abruptly after the first number due to a leak but we returned later and it was fantastic. It took three (count 'em three) tries before we saw Beauty and the Beast all the way through because of mist blowing onto the stage. Bobby scored more than me on the Toy Story ride and Expedition Everest still made me cry. Four times. Our car still smells like swamp water but it couldn’t kill our fun, fun, fun, fun . . . fun.

Lowes Motor Speedway in Charlotte, NC – No, not for the rained out NASCAR race, though we could have stayed for Monday and easily bought resale tickets for a pittance. We went for the stuff at the circus in the parking lot and because the husband wanted to replace my favorite hat that went over the edge(gulp)at the Grand Canyon in March.

In between were days of driving with my Boo. Doing what we like to do. I got to knit - although I thoroughly messed up my project and had to switch to smaller things. But mostly we just enjoyed each-other’s company and the music we could find on the radio instead of CDs we brought from home. Or just talked.

My husband. He loves me.

It still amazes me.

My Husband . . .

2009-05-14T10:28:00.006-04:00

. . . calmly woke me up this morning and said, "Boo, do me a favor. Put some clothes in this suitcase". My first thought was "Oh God, he's sick and has to go in the hospital after work and didn't tell me - how like him."

I think I managed to choke out "why?"

"You need clothes for Honeymoon."

On Saturday we will celebrate out ten year anniversary. Not for a nice weekend somewhere, but 8-10 days and we leave as soon as he gets home from work. I have no idea where. Heck, we just got back from Vegas.

My husband. He loves me.

Vegas Baby!

2009-03-30T14:08:00.003-04:00

After I got up off the floor(see previous post), I really needed to hit the blog. We just got back from two weeks vacation.

I highly recommend two weeks at a time, especially if travel time and "recovery" is needed. We live in Maryland, and went to Las Vegas, toured some of Arizona and finished with a few days back in Vegas. We stayed at the MGM Grand the first week with a plan to decide on the hotel for the end of our trip later. Our reservation was incorrect and we were upgraded that night. It was still incorrect, so they upgraded us again in the morning. We were transferred to a "Hollywood Suite" on the ground floor - right off the casino floor on a secure hallway. It was palatial. Luckily I did not pee myself when the bellman opened the door and showed us in, it was that amazing.

Folks automatically think of gambling when you say Las Vegas - we only bet on the NASCAR races. There is so much more to do. We went to Las Vegas Motor Speedway for a day at the Neon Garage to see the cars and drivers up close and take pictures. I even had a private moment with my favorite driver I'll always remember. We went to the Shelby427 Nextel Cup race too, and while I didn't pick the winner, I won one of my bets! (that my driver would beat his teammates) You can bet on lots of things in Vegas.

Then there were the shows. Our first show was Ka from Cirque du Soleil at our hotel. That show with it's ever changing stage was worth the trip. Then we saved lots of money using Tix 4 Tonight. They didn't carry everything we wanted to see, but for up to half price plus 10% with a coupon it was worth a trip downstairs or across the street. With their service we saw another Cirque show LOVE (click video tour up top) an amazing show inspired by the music of the Beatles. Then there was The Vegas version of Phantom at the Venetian from Tix. It was a bit shorter than the Broadway show to do away with intermission, and the overall did not suffer. We hit Crazy Horse Paris at the MGM which was an all female review of perfectly matched body type women plus a few unique acts in a small theater a la strip joint. They weren't the feathered showgirls, but I had to admire their precision.

We ate rather moderately in Vegas this trip, with no big casino dinners. Instead we hit some great local fare and chains we don't have at home. Places like Cozymels, (twice!) where our waiter David made fabulous guacamole tableside. Or the Italian Buca di Beppo - famous for double portions to be served family style and split. And Memphis Championship Barbecue really deserves the trophies in the case that back up that claim. We also favored the 24 hr Studio Cafe at the MGM with reliable service and good food for several breakfasts and a lunch. Their Ruben was the best I've ever had. We checked out In-N-Out Burgers and I also made several pilgrimages to Jack In The Box. Jack's was a favorite of mine from High School and was the first drive through with "talk to the clown" in our neighborhood. My best friend and I still talk about it.

There was other stuff of course, but let's go on to Arizona, shall we?

We took off the south route to Grand Canyon, marveling at the desert and the mountains. The two days there was a trip back in time, to when I was 5 and my family drove across the US in a station wagon. I found myself choking up big time, even in the gift shop. Srsly. But the wind. The WIND! It was the first week of March and we expected temperatures in the forties, but the WIND!

I lost a hat over the edge.

Then it was off to Monument Valley in Navajo Nation. That is where John Ford filmed many of his Westerns with John Wayne. Movies like Stagecoach, Fort Apache and She Wore a Yellow Ribbon. Movies I used to watch with my Dad. Seeing those sculpted red rocks rising out of the earth for no apparent reason was just as sobering as the split earth we had left behind. Our hotel The View, was perched on a cliff and has only been open since December. The feel of the place was very spiritual and our pictures are amazing.

Next we headed south for a bit of historic Route 66, stopping for a night in Flagstaff before heading back to Vegas. We even managed a movie and shipped a box of laundry home from there.

North now to cross Hoover Dam, where Bobby spotted some Big Horn Sheep as we emerged from the mountains. We toured it the last time we were in Las Vegas, but were surprised to see they are now building the Hoover Dam Bypass. It was interesting to see the two sides of the span working towards the middle.

Back to Las Vegas. Back to Tix 4 Tonight. Vegas is also known for magic, and we saw two shows. Lance Burton is talented but quite dated and needs a smaller venue so the empty seats aren't so noticeable. Still, after I got past his canned patter, the show had a few good "howtheheck?"s. But Penn & Teller kicked his butt. Part of the butt kicking is delivery, but even the tricks they explain are pure . . . magic. After the show they have a meet and greet. I'm not much of an autograph hound, but I happened to have a 3 of clubs in my scooter pocket and Teller signed it "Is this your card?". Very cool. Finally, we closed our Vegas vacation with the dozens of feathered ladies and the muscled men of Folies Bergere at The Tropicana. We were fortunate to see them in their last month and were sad to hear they were closing after 49 years - the longest running show on The Strip. All those shows. And with the discount, we could get the better tickets. Yes, we liked Tix 4 Tonight.

A Huge Milestone

2009-03-28T12:37:00.005-04:00

Last week, I got up off the floor. All by myself, I got up off the floor. That is something I had not been able to do for oh, let's say three years. I did a really dumb thing in my bedroom and as a result took a tumble. To make matters worse, I did not have my brace on - which, as you can imagine, contributed to the initial gymnastic part of this story. I've been practicing getting up in PT, but have not been successful because my new brace doesn't allow me any purchase with my right foot at the toes. I only have the tip of my right toe down to push on that side. An almost 300 lb ballerina I ain't. So I took a different approach, and without sweating the details, I put the brace foot up first and the trumpets sounded. Confetti flew and streamers descended. Thousands of doves were released into the skies. Okay, a sparrow flew by.

But, my Physical Therapist cried and Bobby took me out for a celebratory pizza.
________________________________________________________

18 months and I'm still slugging away at Physical Therapy.

I wonder if that's some kind of record? Without my physical therapist, I'd still be on the floor. Heck, I'd still be unable to walk into a restaurant, or escort my Aunt up to her apartment on foot, or simply have the balance to carry a knitting bag or a purse and still be able to open a door. She has worked with me through new skills and fast progress to building strength and endurance as we tackle even bigger goals. I believe a lot of people reach a plateau, run out of insurance or money, or just plain give up. My therapist says as long as she sees progress, she will treat me.

And they say the medical profession has gotten jaded and lost it's heart.

Gee, where does the time go?

2009-01-12T15:57:00.004-05:00

Life is good.

The week before Christmas 2007 was my last radiation treatment. The week before Christmas 2008, my blood counts were finally normal and I took my last antibiotic, which ended all chemical treatment. I also had a terrific follow up MRI of my brain but I will continue to see my Oncologist for follow up and MRIs every 2 months. I'm getting back to normal, whatever that is. I just have to remember what to do with myself.

In Physical Therapy I've worked hard for over fifteen months and have almost reached my maximum potential. Then I have to find a gym for maintenance. (eeek!) In a way, I am in better shape than I have been for a very, very long time. Balance. Strength. Stamina. Cardiovascular status. I'm stiff and creaky in the mornings or when I've been sitting, but when I get warmed up . . .

I CAN

Do sit ups, press ups, and stand ups(without holding on to something)
Stand without a cane near a corner and kick a ball with my therapist, changing feet and aiming like a soccer star
Catch and throw! Fast! While maintaining eye contact with my therapist!
Pull 8 lbs of weights in three different directions
Walk an average of 14 minutes on the treadmill
Walk backwards
Stand on my feet or shop in a store up to an hour without collapsing
Load my scooter in and out of my car by myself, even on a windy day in the cold (a HUGE goal)

Everybody wishes folks a "happy and healthy New Year". Yeah yeah yeah.

I hope you tackle something you've been wanting to, but never thought you could.

No matter how small it seems.

For Sherry !

2008-10-27T10:41:00.003-04:00

New Brace

2008-10-26T11:50:00.002-04:00

So.

I picked up my new leg brace and shoes last week. “Carbon Fiber” he says. “Lighter than your old brace” he says. “Any color you want” he says. “You can buy regular shoes, even tennis shoes” he says.

I told him Princess Pink.

Shoes! I gotta buy shoes. Lots of shoes! And socks. I haven’t worn socks for years. My old brace and boots are lined with sheepskin and socks wouldn’t slide so … no socks. I dreamed of gliding into a room and doing pirouettes. “See that graceful woman in her new shoes? Aren’t her socks lovely? OMG! She’s wearing a designer Princess Pink brace”.

~~~~~~~~~~~enter reality zone~~~~~~~~~~~~~

Old brace = 4.5 lbs
New brace = 4 lbs

Old footwear = delicious handmade custom leather boots in two shades of rich brown, laced up the side ankle high with deer antler buttons. Very cool.

New footwear = Black orthopedic oxfords. Not cool.

And while the pink is certainly Princess, the straps are NEON.

I haven’t checked yet, but they may glow in the dark

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

So.

*Princess* and I are actually getting along better than I thought we would. I stand straighter, walk better, my feet don't hurt, etc. But when I take her off? Aaaauuuggghhhh! My muscles and tendons are going through a tortuous period of adjustment right now, as expected. My physical therapist is gleefully plotting new tortures as I type.

The basic clunky black shoes are because I'm just getting used to the brace and the new balancing act. Once that is second nature, I get to go back to Mr Very Nice Shoe Guy again for a look at something a little more stylish. yay. As for the socks, can't stand 'em. I have reeeeeeally huge calves and it's hard to find knee highs so I've got orthopedic white Dr Scholls socks that diabetics wear. They're adequate, comfortable and reasonable. I wear an anklet on one side and a knee high under the brace. I have no desire to knit custom socks however (never have understood the fascination). I've worn a brace for 17 years and for me, thick is necessary for protection against straps and nerve damage.

But I am walking better. Straighter. .5 lb lighter.

The neon is growing on me.

What a Year.

2008-09-26T18:15:00.005-04:00

One year ago today I had brain surgery.

I had to wait nine days to find out I had cancer. But I knew. The last year has been the roller coaster I was warned about. But really, it looked like this.

I didn't start at 100 percent. Walking with a brace and cane, loosing cognitive brain function and feeling like something was wrong didn't exactly feel like I was on top of my game. First there was a steroid "high". Then the steroids began to affect the muscles of my legs making walking very difficult. The sharp dips are the weeks after chemo once radiation was over when the fatigue was the worst. Those weeks I was guilty of missed and canceled appointments at times. I slept a lot. Everything hurt.

But look at the tail of that graph. I coasted a while then Up Up Up ! Slow and Steady wins the race. My physical therapist and I invent new ways to challenge my muscles. We look at practical needs like loading and unloading my scooter out of the car - what motions are needed for that? What muscles need to be stronger? How will my balance be affected? She's very inventive and lets me give a lot of input. And guess what? I'm up to 23 minutes on the treadmill. Now, do be aware that is under a controlled pace with no distractions. And that 23 minutes was my all time high (my times fluctuate a bit). Y'a know my heart is in better condition now than it ever was due to the workout three times a week plus home exercise most other days.

It's been a roller coaster. I've always loved roller coasters. I know it's a figure of speech, but I was mostly aware of what I was in for. I paid to get on. There have been some scary turns but I actually had fun without screaming at all. My legs are a little wobbly getting off this ride, but I didn't puke and maybe I'll get the tee shirt in the gift shop.

Hey!

Remember all my references to The Wizard of Oz?

There's no place like Home.

Walkin' and Singin'

2008-09-09T13:07:00.013-04:00

I have been walking into buildings.

Opening doors and walking right in without scooter wheels under me. Since I found out I can walk 10-12 minutes on a treadmill, I started with walking into restaurants (with seats I can trust) and running small errands. I've been to my Ophthalmologist, Target, Office Depot, shopping for glasses (groan), even to the Mall once. When I saw that the shop at the Mall would be close enough to walk, Bobby took my scooter back to the car and I walked the rest of the way. The walk back to the car was slow and steady and I even took a brief detour into another store. Look out 2012 Olympic Marathoners! I did discover one thing though. The floors at the mall are H-A-R-D and very different from using a treadmill. Keeping an even pace was difficult, but that will come with more practice.

I wish I had the incentive to become a Mall Walker, but for five minutes out and five minutes back? Booooring. Maybe down the line. Perhaps a different incentive place to walk for my non-PT days. I need to find somewhere with a decent walk, a place to knit, and comfy chairs I can trust for Tuesdays and Thursdays. Then I might do it more often and keep this body moving.

Slow and steady wins the race.

In other news, we went to see two groups we really like in one night at Wolf Trap recently. It was a fabulous night of music. I couldn't figure out who would be opening for whom. Great Big Sea was first and rocked the house. Bounce Bounce Bounce! Gimme lots of mandolin, fiddle, bodhran and penny whistles and I can't help singing. Many of their songs are intentionally catchy with great choruses. The song England by Sean McCann from their album Fortune's Favor made me sob however. His voice filled the hall, strong and clear since he wrote it from his own heart, a poignant tale of early English settlers to a New-found-land.

Then it was time for the changeover to the more eclectic Eddie From Ohio.Everything from Blues & Gospel to Social Comentary and Comedy. After the boisterous Great Big Sea, they seemed positively sedate, although they are truly far from that. It's just that their music doesn't inspire bouncing or dancing in the aisles. At one point Michael Clem, on bass, raised his hands over his head to encourage the crowd to clap along with the song. It just sputtered out unfortunately. I was embarrassed for them. It was like a comedian who keeps saying "I said, are you having a good time?". But they were great. Srsly. And they sang my all time favorite song of theirs Tom Burleigh's Dead. It's an odd song, but I love the chorus and belting it out in the car.

Then Bobby surprised me with Les Miserables tickets. I noticed the production when we went to GBS and EFO. About two weeks later he said we were had something to do Friday night and took me on a long and twisted drive ending up on the Dulles Toll Road. My heart skipped a few beats and I thought he was kidnapping me to Vegas. After all, he knows how to pack for us. But no, he said I had appointments and he wouldn't do that. Drat! That would be soooo cool. Instead it was back to Wolftrap, but for what I wondered? Sure enough, the famous poster of Cosette was at the entrance with a warning of gunfire in the second act. I was quite delighted, especially since Bobby had said it wasn't his kind of show when we were there previously.

All the while he was plotting a musical feast for me.

It. Was. Fabulous. The actor playing Jean Valjean was very good although he didn't have the clear high range necessary for Bring Him Home. Fantine and Cosette were both delightful, and I really hate most sopranos. The Thenardiers were suitably amusing. But the despicable Javert stole the show. My Gawd, what a voice and stage presence. And the rest of the company was so talented. It was as if each one had the lead role and all eyes were on them. The staging was simpler than the Broadway version of course with no moving circular stage, but I didn't miss it except for the song Turning (hee hee). I am still finding myself tumbling Les Miz songs in my head.

My husband. He loves me.

The Bawdy Balladeers

2008-08-02T13:02:00.002-04:00

Once upon a time I was part of a successful A Capella group called The Bawdy Balladeers. We had two recordings. I cried when I saw this on ebay. The link will only be good for two more days so I'll summarize. My best work is currently worth $4.25.

Divided by three musicians.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Sorry I've not written.

My sinuses are better. I really do just have a normal post nasal drip now. Yaaaay! Now Bobby is fighting the same thing it appears. I must say he whines a lot less than I do, and he did go to the doctor after seeing what I went through. Giving it back to me would not have been optimal either.

Physical Therapy is coming along very well. It seems each day is showing improvement now. My therapist is giving me new and more challenging things to do. Monday I walked 5 minutes on a treadmill which just freaked me out. Wednesday it was 6 minutes. Friday? 7.5. Okay I was pushing it but I felt like Rocky Balboa going up the steps to the Philadelphia Museum of Art. One day I'll get there. Yesterday I was kicking a ball and changing feet like Pele'. Okay, not quite that good, but I had my back to a corner so I felt safe and by gum, I was kicking that ball. I also played goalie. I was reaching to catch the ball as she threw it at different sides or speeds, and sometimes bounced it. It was tough at first because of the combination of eye-hand coordination and my problems with balance. After a bit though, I was changing the speed and angles back to her. We actually had fun. And I'm getting better.

Go figure.

In other news, I had a great checkup with my Oncologist. Here's the highlights:

He loved my MRI, I have a copy of the CD. Wonder what it would bring on ebay?
I stop the weekly bloodwork and go to monthly (yeah!)
I can stop Protonix which was protecting my stomach while I was on the steroids.
I can get the hair on my chinny chin chin waxed. Finally! I've always had some facial hair on my neck. Because of the chance of infection, I wasn't to pluck or wax them for the duration. These weeds have been growing for nine months although I did cheat when a few got hideously long. I still have a bump where one of those was that scared me into stopping. Well . . . my counts are better and I can space my labwork so I asked. He looked me right in the eyes and said "Yes". He probably thought I was a lunatic. The nurses probably field those questions but I had it in my book so I wouldn't forget to ask.
No more Radiation or Chemo. So I asked him. Did the treatment kill the rest of the tumor?

Not necessarily.

See, without another surgery to biopsy tissue, my doctors cannot determine what's in there. You don't have a craniotomy just for kicks to find out you don't have cancer anymore. Even if it were standard protocol, I'm not willing to pop the top again to find that out. They certainly aren't going to make guesses or give me some numbers out of the blue. And there's no blood test for brain cancer. But remember, given the genetic markers my tumor had I am expected to do extremely well.

So I guess y'all are going to have to put up with me for . . . a while longer :-)

Sinuses of Doom

2008-06-29T06:40:00.004-04:00

Remember that fever I had a few weeks ago? I should have seen my doctor or at least called my nurse practitioner then, but did I? Nooooo! Nurses make very bad patients. "I'll be fine", I said. "See, the Tylenol is working", I said. "It's just my sinus crap", I said. "Maybe I'm dehydrated?" I said. After a week and a half of a bouncing low grade fever, Bobby finally convinced me to call the Nurse Practitioner at Hopkins. "You probably have a sinus infection. See your PCP today and call us back to let us know what he says." Telling your PCP's secretary that your Oncologist at Hopkins wants you to be seen Thursday instead of next Tuesday is like having the keys to the kingdom gates. I went over that afternoon and he took a peek. He barely had to glance in there and pronounced me infected. Armed with antibiotics and Nasal spray I headed out into the world. After the full course, I got better but just couldn't shake all the gook in there. He said to call if I wasn't better, so I did. Antibiotic #2 is now on board and both offices want to hear from me this week.

But I'm still retching this stuff.

I feel like I should at least get a cute little baby for all this morning sickness I have. (I don't mean that God, really I don't) Just about every time I roll over at night, I have that lovely sinus drain that I try to choke out. When I do get up, I can look forward to puking after a bit when my stomach realizes it's full of gook swallowed in my sleep. No appetite. I have a horrid taste in my mouth. Once it became apparent I was wasting his good cooking, Bobby served less. Now we don't even eat dinner. We have snacks. And when I do feel like I can eat something, it's only half a PBJ or some crackers and cheese to nibble or last night it was half a can of refried beans. Believe it or not that worked for me. Bobby's been trying to entice me with ideas without pushing and has come up with some good food for me - like the beans. And the nausea is all the time. I mostly forget I'm being treated for cancer. My drug for nausea during my 5 days of chemo each month is amazing. (I may have mentioned this before?) I look at this bout of nausea and go "geez I wish this would go away" and "I'm so tired of this crap". But I know it's peanuts in comparison to the real damage people on IV drugs deal with. And speaking of chemo . . .

This mess is postponing my last chemo treatment. The whole chemo/immuno suppressed thing hasn't been a big deal to me because they've always told me my counts were fine. I try not to micro manage. I don't want to micro manage. But because of the infection the CRNP (Certified Registered Nurse Practitioner) for my Oncologist says my counts took a dip with the infection. "The lower end of normal. It is better to wait a week and be prudent then to get you in trouble with your counts dropping." (quoted from her email.) I just hope this week's labwork is good so I can take it next week. I was hoping to celebrate July 4 as my Independence Day. But that's okay. Better to skip the fireworks than be sicker.

The scariest thing is, it may not be my sinuses. The symptoms I am having: nausea, vomiting, diarrhea (I forgot to mention that), decreased appetite . . . could be because I stopped my steroids. My adrenal glands may not be fully functional on their own. If that is true, I have to take some. Much as I hate to, it's nothing to sneeze at. I will insist on a blood level first though. I really don't want to go back down that road.

So until I know differently I take my pills, drink my liquids, eat what I can . . .

. . . and call them in the morning.

I Reveal Myself

2008-06-24T12:15:00.003-04:00

This little bit of fun has you answer some questions and it makes a mosaic of your answers (after searching through pictures on flickr). Here's mine, with the original photo names underneath:
1. My name 2. Favorite food 3. High School
4.Favorite color 5. Celebrity crush 6. Favorite drink
7. Dream vacation 8. Dessert 9. What do you want to be when you grow up?
10. What do you love the most? 11. Single word to describe you 12. Flickr name

1. Cinnamon Bonnie, 2. Summer on the Chesapeake, and the Living is Good, 3. Transit time tunnel, 4. Fly me to the Mooooon..., 5. Big Mike, 6. pb choco banana smoothie, 7. Bad Yeti!, 8. Los burros, 9. Pink Motel, 10. Getting to know you, getting to feel free and easy..., 11. My Most Treasured Possession, 12. t-shirt

The links at the bottom are to credit the original photographers.
Piracy is only amusing if you are poking fun of Jack Sparrow.

Sayonara Steroids

2008-06-15T23:27:00.002-04:00

On May 29 here's how the conversation went.

Nurse Practitioner: "How much Decadron are you on now?"
Bonnie: "2 mg every other day"
Nurse Practitioner: "So when was your last dose?"
Bonnie: "Yesterday"
Nurse Practitioner: "So . . . that's it, you're done. Yesterday was your last dose."
Bonnie: "Yessssss!"
Nurse Practitioner: "Happy Dance! Happy Dance! Happy Dance! C'mon! Happy Dance!" (At which time she begins to jump up and down, gleefully clapping her hands and trying to grasp mine.)

Healthcare sure has changed since my day.

There was a catch (isn't there always). If I had certain symptoms, blah blah blah, it would be a bad sign and I should call. The only thing I developed was this weekend I had copious amounts of sinus drainage and a fever for two days. So, since I've had none of the scary symptoms and I've been off the stuff for two and a half weeks I think I'm good to go. "Off the stuff" geez, I sound like an addict. But really, my body was addicted to the artificial hormones. I tapered off for a while, then every other day to "kick start the Adrenal Glands" then went Cold Turkey.

Do I need a Twelve Step Program?

A Sad Day

2008-06-05T22:00:00.004-04:00

Earlier today I started a blog entry about how excited I was to announce I had been off of steroids for a week and felt it safe to put it in writing. I also asked for continued prayers for the child of my friend. Brie and her Mom had been living at The Johns Hopkins Children's Center for more than 2 months, seeking a miracle for her Severe Aplastic Anemia. I decided to put the only picture I had of her always smiling face here. I was cropping it a bit when our electricity went out and was still out when I arrived at my usual Thursday night Sit-n-Knit at Mr.Mikes. My knitting friend's faces said it all.

Brie was a sweet girl. This picture is from 2 years ago at a K1P2 Yarn Swap - she got my yarn and I got hers.

Thank You God for lending her to us.

Vacation. Take II

2008-05-28T16:20:00.004-04:00

So.

I don’t know if you guessed it yet, but we don’t usually have much of a plan when we travel. We like to take off, drive around, and see what we can see. It may mean missing out on the more classic sights of a town, but boy do we take delight when we find some obscure historic plaque or an interesting place like Mount Baldy in Illinois which moves four feet a year. In Cape May we came across Orr Street (an alley really) and a whole churchyard full of relatives of mine right by the front walk. All because we were just driving around looking at the architecture and ducked down an alley.

In our driving over the next few days, we found many fascinating and probably forgotten or unnoticed bits of New England. We fed our fascination for bridges, architecture, odd houses, man hole covers, and what we call “hysterical markers”. You know, those stone or metal plaques by the side of the road announcing the spot where so-and so did such and such. Like one that said George Washington stopped near there about 20 times including once about which he wrote in his diary “Stayed at the So-and-So Inn last night where my sick horse died”. Now that deserved a hysterical marker wouldn’t you say? Or at the dam where we found a Warning sign stating “RISING WATERS - Be constantly alert for a quick rise in the river. Water upstream may be released suddenly at any time.” This was placed at the top of a steep cliff overlooking the riverbed under the falls. Take a look at the pictures I posted May 26 again. Think the water will get that high? Who can say?

Yes. We’ll turn around for a good hysterical marker any day.

After a few days of town hopping on the coast, it was on to The Berkshires for the last leg of our vacation. Saturday was spent at the Massachusetts Sheep and Woolcraft Festival. Such a lovely bunch of laid back sheepie folk. It’s more intimate than MDSW and I could navigate the paved site quite easily on my scooter. The elevator to the fiber competition exhibits was apparently broken (it was blocked off) but Bobby said there wasn't much besides the fleeces so I wasn't that disappointed. There were Sheepdog trials all day and watching the working dogs was quite fun, especially when folks explained the finer points of judging to me. It broke my heart to see a good dog get a contrary sheep who just wouldn’t stay with the other two in the group but chose to run back to the pen and ruin everyone’s high marks. I love seeing the animals – sheep, goats, llamas. There weren’t any alpacas at this fair. Waaaah! I did get to see some shearing and the 4H showmanship contests. It’s serious business for these kids. I said to Bobby, next there will be Alpaca and Llama competitions at these functions. Woo Hoo !

In fibre, the lean at this fair is definitely toward spinning and weaving. Wheels and looms for sale were plentiful as well as all the trappings. But yes, there was yarn. I bought some lovely white wool to pet for a while and some crazy soft multi wool on sale. Bobby bought me a little sheep pin to remember the day. I put it on my hat with my Ravelry pins - oh yes, there were Ravelry folk there. It is an online group that is the darling of the modern knitter. I recognized Ravelers and was recognized by my Ravelry gear – very cool although there was no formal gathering of the Ravelry clan as there had been at Maryland’s festival. All in all a great day.

And did I mention the lamburgers? And the $1 hand dipped ice cream cones?

Ah food. Vacations are all about food. My staple during the trip was Chicken Corn Chowder. Bobby automatically ordered it when we sat down in just about any restaurant. And then there was fish and shrimp and clams and scallops and lobster and . . . you get the picture.

In Portsmouth I finally got my favorite New England food. Lobstah Roll. It’s a simple food, but mmmm mmmm good. The cheaper roadside stand version is lobster claw meat in a very light dressing stuffed in a hot dog roll. The better restaurant version boasts huge chunks of meat and shredded meat overflowing a soft sub roll. (For those in the know – think Captain Harvey’s steak subs with lobster instead) The State Street Saloon waitress served up a freaking huge portion and the first real New Hampshire accent we had encountered. Between Lobstah Roll and the Chowdah, I didn’t starve while in New England. Then there were the clams. I never really liked clams until this trip. I never really had clams until this trip. True fresh clams are amazing and not like the rubber I always associated them with when I got them at home. I guess it’s like ordering a crab cake in Kansas. Wouldn’t be prudent.

We had a nice dinner at our hotel in The Berkshires the first night and Bobby asked two of the waiters for recommendations for the next night. That led us to Asters after the Mass S&W for his birthday. Scallops big as hockey pucks that were sooooo tender . . . like buttah. Chef Reda knows his stuff. We also discovered Ninety Nine, a fine reliable New England chain. Add several ice cream parlors whose names escape me to our list of stops on this trip. We can thank Jill for a lot of our gastronomic pleasures. Jill is the voice on our Garmin GPS. Yupper! She has a name. You can choose male or female and from two or three accents. I like Jill. Punch in “ice cream” and up comes any establishment with those exact letters in the name for miles and miles. This includes things like “The Clarice Creamery and Dairy Farm”. She sure is entertaining our Jill is.

F.Y.I. Did you know that Dunkin Donuts is the Waffle House of New England? There’s one on every corner. Literally.

On Sunday we packed up and drove home from Massachusetts. It took about 11 hours but we did manage to stop for a great dinner at an Irish pub which served up a tasty Shepherd’s Pie and some Fish and Chips for Bobby. Then home again, home again, jiggedy jig.

So when’s our next vacation?

We went on VACATION in New England

2008-05-26T21:22:00.008-04:00

We had a long awaited wonderful time and my stamina actually improved each day as I had to walk into restaurants, rest stops and more. My Physical Therapist will be so proud of me. We spent more time with each other than taking pictures, but here's a few to prove we were there.

First it was the Carlisle Import and Replicar Show in Pennsylvania. Some very cool cars there and I was thinking of my pal Sco :) Cooperstown wasn't far so we decided to head there on Day Two for the National Baseball Hall of Fame and Museum. Geez. You woulda thunk we were in New York there was so much focus on The Hated Yankees. The actual "hall" where the inductee’s plaques were was rather unimpressive to me. Kinda plain and empty. It did however inspire a kind of hush over the visitors so I guess it was appropriate.

The next day we set up a home base in Seabrook, Mass and went to explore Plum Island. I got to use Bobby's birthday present (camera) to get some bird shots. I may have to keep his present. Turns out the elusive Plover was mating and nobody could access the beaches. I did get some nice pix of some kind of cute bird everyone else was snapping away at. When I looked it up at home though - not a Plover. I wonder how many other folks bothered to look it up?

At the suggestion of the young and clueless girl who drew my blood that day (yeeees, even on vacation I had to get THAT done) we had dinner at DiMillo's a retired ferry boat down at the waterfront. Nice ambiance for a restaurant, but I couldn't get just a stuffed tail - had to get the whole lobster and I didn't feel like messing with it. I opted for a Lobster Pie. Sounded like a Shepherd's Pie and I love those. The lump lobster was 90% claw (okaaaay, the menu said "lobster meat") and the "crumbs" on top were mush. I wouldn't order it again. I should have had the Lobster Roll - the guy behind Bobby had one and it looked lovely. Lesson learned: don't ask people who admit they don't know the area for a recommendation for dinner.

More on the rest of the trip later. The pizza just got here and Bobby says I gotta eat.

OH YEAH !!! Dad is home and doing just fine. Thanks to all for the prayers and concern.

Not So Good and Good News

2008-04-26T13:19:00.012-04:00

Dad "popped a few rivets" as he said to me. He had a Sternal re-wiring with a plate and is back in ICU, still intubated for a bit to get some good rest. They have to find that fine line of keeping his lungs clear but prevent further complications. He'll be 80 this year and has some other health issues. Say a prayer okay?

AND NOW FOR SOMETHING COMPLETELY DIFFERENT

So I'm washing my hair the other day and it feels weird. I made a discovery.

I am growing a new crop of hair.

Shhhhhhhh ! Don't scare them. And they're curls ! Don't know how this will go, but it's cute as heck. Does this mean no more perms? Thing is, the old hairs are still straight. Will they continue to come in straight? This could be verrrrry innnnnteresting!

I got Bobby to get the camera and take some Macros. The two "sparse" pictures are near my incision which is where the radiation was focused. As you look farther away from there, more new hair is mixed in hair that held on for dear life. There is only straight tiny stuff in one area which I think was clipped before surgery (they don't shave anymore). Dr Grossman said it may not come back very well there.

Okay.

Have a look see - you have to blow them up to really appreciate their beauty.

Add My Dad

2008-04-17T23:04:00.005-04:00

Now my Dad is having Coronary Bypass surgery. It started innocently enough. After being short of breath when walking the halls of Hopkins recently, he saw his cardiologist. One thing quickly led to another and he was in the hospital. It's been delayed twice already, once to add a left carotid endarterectomy and again (for reasons unknown) over the weekend. But they're keeping him admitted.

My family knows how to throw an O.R. party. When I got to my Dad's room today, nine assorted relatives greeted me, backed out into the hallway. I couldn't even get to him there was so much love in his room. As a former hospital worker, that made me wince. But I don't work there and nobody knows me so pthhhhhhhhdt ! It reminded me of my first Craniotomy. I had thirteen people in the waiting room. People just kept coming. I was so embarrassed. It was my hospital. I was making a spectacle of myself.

Later I realized it wasn't my show.

Not to be morbid, but it's kinda like funerals. People need to gather. They need to protect each other. And my Dad has twelve brothers and sisters plus their spouses, kids, and his wife's family who love him very much.

We're gonna need a bigger room.

So add my Dad to your list tonight. He and his wife will have to cancel the cruise in May and he may have to re-think that cross-country drive in June, but with a gathering of the clan and a few prayers from you guys ~ he'll get by alright.

Legs

2008-04-14T12:21:00.003-04:00

My legs may be weak, but they are smoother than a baby's butt. They have absolutely no hair on them. I don't know why. I have hair on my arms and weird steroid hair on my face, but not one on my legs.

Just thought I'd share this for those ladies who shaved this morning.

:-P

Oral Chemo

2008-04-11T18:20:00.000-04:00

I'm so blessed to be taking Temodar by mouth once a day at night for just five days a month. Likewise the Anzemet for nausea works like a charm and I sleep like a hibernating bear in spite of the higher dose.

I have a young friend at PeaceandLove who isn't so lucky and is feeling very sick right now. She doesn't even have cancer but is taking some nasty treatment drugs for severe aplastic anemia. At twelve years old I think she's pretty brave and I admire her. I've been trying to think of the perfect gift for her but I'm so out of touch with what twelve year old girls like these days. I think I've got it but need to explore all the options it has . . . and check with her Mom.

Got my two month MRI last week. I got to ride in the Cadillac which has a large bore. Comfy! The results were way better than acceptable. Blah blah blah stable blah blah blah no midline shift blah blah no abnormal enhancement blah blah blah essentially stable. So . . . I'm good to go. And my Oncologist (grinning from his little ear to little ear) and I made a plan for decreasing the steroid once again after this round of Chemo. Steroid every other day. This should kick start my adrenal glands into working on their own again he says. Hey, I gotta go with the Hopkins guy - I pay him the big bucks. He says I'll fell lousy on the off days. We'll see.

I'm not your average cancer patient. :)

My body continues to maintain strength this week. Even balance is a bit better I think. Yaaaay PT. I haven't experienced the big Whump! of fatigue that last month's chemo hit me with. I think the further away from my radiation I am helps that part. Plus I have to eat right, drink fluids and get enough sleep. I work out most mornings and sometimes in the middle of the night I limber up a bit too. Weekends are when I become a slacker sometimes. Sleeping late has it's drawbacks when Bobby makes French Toast for breakfast occasionally and I just have skip exercise to go out and eat it while it's hot . . .

Did I say that was a drawback?

I Saw Esau Sittin' on a See Saw

2008-03-25T18:48:00.004-04:00

Seems I'm always up and down on this blog.

I'm on the smallest dose of steroid possible. Just waiting for the word that I can come off. Breathlessly awaiting those three little words "discontinue the Decadron". I just hope I'm not putting too much on that fact. Coming off will not fix everything going on with me Lord knows. I've been blaming the steroids for a lot lately. Let's hope they are guilty of some things anyway. I could use a little sunshine. Some symptoms could just disappear. Maybe a few. Yeah.

Last time I wrote I had a tough time getting out of my car. That happened one more time again at Physical Therapy, the only place I drive to alone. I was in a hurry because I had to wait for a parking spot. Thank heavens they could come out to give me a hand with that uncooperative foot. I've got them on speed dial now for insurance - so I don't need help again.

Good grief.

But in general Therapy is pretty good. I've been inspired to work hard again since last time here. The right leg is a bit stronger. Again. And I keep working the program and fighting the good fight. One of the important things in this phase of my treatment is to not slide backwards. Most days I'm still getting a lot of sleep but my stamina when walking IS improving. It's almost imperceptible but it's there. I can walk in to therapy and I'm not huffing and puffing and grabbing something for stability so I don't fall down. I can come out in the morning and go straight to the kitchen for breakfast instead of stopping to rest and pant in the living room for a while. I'm still bushed when I do sit down to eat and my Mini Wheats get soggy before I can get a spoonful, but I'll take what progress I can.

I'm finding muscles I forgot I had. Monday I found my butt. I know. I know. Hard to lose one as big as mine, but I couldn't clench my cheeks together. (the things you don't know until your therapist says "okay now try this . . .") I could do left then right but not together at first. Then after a while . . . Taa Daa! Both cheeks. Bouncy bouncy. How she dreams up this stuff I'll never know, but anything to build up these weak muscles of mine. Now I'm sitting here at the computer making the tightest buns in Howard County (I know scary visual). And my thighs! I got a blue rubber kick ball at the Target' for thigh strength. Guess where that goes? ;^P

Yea team!

Oh, sometimes I still have my weak moments for totally unknown reasons. Walking to the car most days is fine, but if I go down to the bathroom then balance to put my coat on first . . . then go down the stairs on those wobbly legs . . . Woosh! And brushing my teeth always makes me weak in the knees and I gotta grab the wall to walk. It's only about 10 steps from sink to bed then plop down breathless and pant for 5 minutes or so with my heart pounding. I'm still afraid of restaurant and other unknown chairs. Can't get up from them - too low or unstable. Theater seats? Wanna hear a horror story? And stairs. Stairs? What are those?

Oh you mean the 4 inch steps Bobby built for me up to our front porch? The porch he raised to the level of our front door so I can get in my own house? Those I can handle.

He loves me.

Yup. Up and down. But I keep on focusing on those ups. There have been some family and friend health problems that have gotten me to take a step awaaaaay from my own issues.

My stepbrother had a liver transplant last week. He's doing well at Hopkins I hear. Whew!
My cousin is having a serious surgery Thursday (probably going to go well, but still . . .)
A friend who's dealing with colon cancer is having his reversal surgery in two weeks. This should be a joyous occasion but no surgery is fun and the first one truly sucked for him.
A sweet knitting friend had to make an emergency flight to Ireland to be with her 12 year old daughter. She had an acute bleeding episode, thought at first to be Leukemia. They're flying back Thursday for treatment of Aplastic Anemia at Hopkins. It's gonna be a long, long haul for them.

Yup. I'm doing O-Kay for now. Please say a prayer for each of them though. Right now please.

Whump

2008-03-10T18:00:00.002-04:00

This month's increased dose of chemo for the first five days of the month hit me like a ton of bricks fatigue wise. I slept 11 hours one day. ELEVEN. Okay, I had potty breaks, but my body needed that much sleep. I could have stayed in bed all day. I had to drag myself out finally for fear of my blood sugar crashing and a headache. I keep some crackers and water in the bedroom, but Bonnie does not live by crackers alone.

The fatigue has slid my PT back several notches. No ambition whatsoever. No inspiration from my John for the last ten days or so. I guess he knows what he's doing and was leaving me to rest a bit. Oddly, a series of circumstances with my therapist gave me no PT appointments in March. Until today.

Today was . . . interesting.

I got out to the car and had a little trouble getting my braced foot into the car but managed finally. Bobby's been doing all the driving, so I'm just tired and out of practice - right? So I get to therapy and get stuck half-way out of the car. I was too weak to drag my bloody right foot out of the car. I couldn't even reach behind me to pick it up by the steel and leather circle at the top because my leg was twisted. Luckily I had my purse in my hand (something I NEVER do) and called them inside. My therapist came out and picked up the brace for me and I landed outside without incident. Really, it was scary but went smoothly.

Sheesh.

She and I tried the in and out of the car again and worked on a few possible solutions. Naturally we worried about me getting home and getting stuck again. I stayed 2 hours until Bobby got off work and could "spot me" getting out at home. We figured it out and will practice again tomorrow. I just need to put my left foot a little further out than I used to. I was stronger after PT too. Amazing how far a little inspiration from my favorite therapist went today. I conjured up Mr. John's face a few times too.

I'm back in the groove.

Good Night Moon

2008-03-05T12:41:00.007-05:00

They're decreasing the steroids finally and the big round moon face is slipping away. The dose has gone down twice since I last wrote. I woke up one morning and I could see my ears. The decrease in my facial swelling is the most welcome effect so far though.

I can breathe.

The pressure from the swelling due to the steroid face had collapsed my nasal passages so much I had been wearing Breath Right strips during the day there for a while. They worked rather well and were hardly noticeable - Safeway brand are clear and lasted at least two days. You know, they might keep folks off some of that oxygen if they could just get what the health care pros call "room air" in their nostrils! It was the worst at night when gravity took everything lateral. It would take me a while to position so I could slide my cheeks to open up.

I'm beginning to look a bit more like me around the eyes and mouth, and my facial muscles aren't so rock hard. I hope I don't get facial stretch marks. My belly already looks like a postpartum nightmare. Still, being able to fit into more than five dresses is very attractive to me. I had swelled up so much the wardrobe was severely limited. Or hadn't y'all noticed? And I've got all new lingerie to celebrate the return of my(ahem) normal womanly curves. Woo Hoo!

I know, TMI.

My hands are waaaaay better too. Knitting it drastically improved and I've only had two episodes of finger cramping - one while eating. You have no idea how happy this makes me. I'm not fully believing in a full cure yet. There could be another reason for the wonky fingers. Have I turned into a pessimist?

Today marks the fifth night of my oral March chemo so the second month is done. This is just too easy. The dose has been almost quadrupled but it had no real effect on me. Well almost. The first night back in February I woke up once and after about two minutes I felt a bit "sick". Not really nauseous, but like I had the flu. Then I fell asleep again right away. I haven't had that since. I can barely walk to my own bathroom and standing still is a nightmare but as long as I'm sitting down I feel great. I have the love and support of my husband, a steady income, the best doctors in the world, an amazing insurance coverage so I'm not constantly on the phone like so many in cancer treatment, and I go for one blood test a week. I have a friend on IV chemo ::waving to John:: whose body effects have made him soooo sick. And he has an invasive test every week it seems. And he's looking at more surgery. And he has had crap at work and with his insurance company while we're at it.

Talk about feeling guilty.

Happy Friday! (yesterday)

2008-02-23T16:09:00.005-05:00

Bobby came home with these and my favorite Venti Mocha from Starbucks yesterday. What a way to brighten the perfectly grey and ordinary day I was having. He bounced in grinning "Happy Friday" and presented me with gifts of flowers and a knitting book. The coffee soon followed. I was overwhelmed. My Boo has an uncanny knack for timing. Earlier I had to cancel Physical Therapy due to some patchy ice still on our sidewalk and the cleaning lady that was supposed to start canceled too. My day was left boring and unproductive. Until he bounced in all sunshiny and loving me.

Life is good.

Sometimes I have to remember that here at this blog. All is not doom and gloom for me 'ya know and I need to let you guys knot that in spite of the veeery slow progress on the physical front - I'm still happy and having fun. My life really doesn't revolve just around this cancer thing. I can't balance, stand or walk right now, but that's about it. (Okay, a bit of an exaggeration) But gimme my scooter and I'm off full of piss and vinegar. When Bobby can get me there - I'm a speed demon. When I can load and unload her myself again, look out. Thursday and Friday were great days of knitting with friends for instance. You can click here to read about it on my knitting blog "tinkknitz" if you like.

Prepare for another Happy Friday announcement though.

Baby Steps

2008-02-16T10:09:00.006-05:00

They tell you you'll have fatigue after radiation.

"They" were right.

I don't know how it affects other people, but for me it feels like my body weighs a ton. Lifting my legs to walk feels and looks like Frankenstein. Add the balance of a Weeble (remember them?) and you get the picture. Standing still is the worst for some reason. I tense every muscle just to stay upright. I am encouraged by my most recent brilliant idea though. I changed physical therapists. Prior to surgery I decided to build some strength, went to Physical Therapy and loved my therapist. After surgery I needed Occupational therapy too and my original facility didn't offer it so I had to change. Well, OT was done a long time ago and I just wasn't thrilled with the chick I was working with. I was doing the same stuff week after week - and this when I was walking, climbing stairs and had plenty of energy. I would be sitting there doing nothing and have to call over to where she was chatting ask her "hey - what's next for me lady?".

I went back to the first place.

Huge difference in my progress now. Carmen is professional, pushes me and sticks with me. I actually improve instead of just repeating the same thing over and over. New things are added. I find myself actually wanting to incorporate small exercises and balance practice in my daily routines as she suggests, like a good girl. Muscle tone and my messed up leg rotation (walking with my right leg pointing to the outside) is being addressed while I'm sitting or lying down. This way I have more energy to work the muscles and don't waste it trying to stand. The standing and walking may not be better, but moving around when sitting, lying down, rolling over in bed (groan!) and my general sense of well being is better. Now I can lift my legs a bit better and my home exercises are making more sense. Imagine that.

Sheesh.

And this week I moved my right ankle in 18 circles. I haven't done that in eons. I cried. Wearing a brace all day basically freezes that ankle in one position. The muscles are contracted. It has bad arthritis. I'm workin' it hard baby. I'll be needing the muscles in that leg and ankle for better mobility in the errrr . . . future perhaps. I went to a demonstration of the NESS L300 Foot Drop System yesterday at Hopkins which was very cool. You may remember it has been suggested for me by a Physical Therapist and Physiatrist there. There were patients trying them out for the first time and were walking without their braces. In a nutshell, when you take a step - the apparatus give a slight electrical charge to the leg muscle and the foot moves properly instead of dragging. There are many baby steps to be taken before that one can be addressed for me, but hey. A girl can dream.

My Godson John is my inspiration when I work out at home. He was a never give up kinda guy and I have a picture of his smilin' face in front of me right now. I conjure it up when I need inspiration to keep going. To pay attention and do it right. To finish those last three repetitions. To exercise the left leg too like I'm supposed to. To stop and rest the muscles like she tells me too even though I feel like I can go on. To breathe.

Yeah. Baby steps, John.

Phase 3

2008-01-29T10:41:00.000-05:00

So now I just move on with my Lion, Oncologist Dr Stuart Grossman.

For the first five days of the next six months I'll take the same oral chemotherapy at home - Temodar. The dose is being increased and they warn it may increase the nausea, but I'm gonna trust my blessed Anzemet to take care of that. Both are being delivered today. I'll continue to get weekly bloodwork. I'll be followed by his most excellent nurse practitioner Clare (love Love LOVE her). The research nurse will call me once a month. Every two months I'll see him.

Like I said. Phase 3. It did break down neatly didn't it?

Surgery. Radiation/Chemo. Just Chemo.

Then what?

Uh, I'm not dying

2008-01-28T10:53:00.000-05:00

It seems there might be family members who think I am very ill.

I am not.

My sister equated my steroid swollen face with the faces of other family members who died from cancer and has been very frightened that I am dying.

I am not.

With brain surgery and brain radiation there is specific swelling in the brain that needs to be controlled temporarily with steroids to prevent (don't laugh) brain damage.
When the radiation stops, the swelling goes down and they stop the steroids.
Life goes on.

Now then

Many of the symptoms I have had (severe fatigue, difficulty walking, shaking, confusion) were from the steroids themselves - it's a balancing act.
On Thursday, Feb 24 I had an MRI and appointment with my Oncologist.
My swelling is gone.
My steroids can now be safely stopped.
They have already started.

Woo Hoo!

Ocean City

2008-01-27T19:04:00.000-05:00

What happens with the Sisters stays with the Sisters.

Bad Blogger - No Cookie!

2008-01-16T11:16:00.000-05:00

My sister just informed me that people who love me are worried about me because I haven't posted here in quite a while. Guilty as charged. Here's what's happening.

The joy of errands with my sweetie is the only time I get out of the house to "see the world" as he says. Last night we happened to be in Laurel and used his new Garmin navigator to find a barbecue. Good Barbecue! (wish I could remember the name of it so I could tell you) Special thanks to John for the terrific advice on the GPS features to look for. I gave it to Bobby for Christmas and it's lots of fun.

We have been to the movies a few times.

I am Legend - C - Don't get me wrong. I really liked the first half. Will Smith. What's not to like? But I loved Omega Man with Charlton Heston, the original film. This one started out great. Until the CGI creatures came. For me it died then.
No Country For Old Men - A - "What's the most you ever lost in a coin toss?" Javier Bardem portrays the evilest dude on the planet. Josh Brolin pulled an unostentatious lead out of his butt. Tommy Lee Jones plays Tommy Lee Jones. The story is not predictable. See this movie. See all the Cohen brothers movies.
Sweeney Todd: The Demon Barber of Fleet Street - A - I love a musical. Johnny does his usual over the top and excellent thing but Helena steals the show as Mrs. Lovett in her opening song. Director Tim Burton rocks.
The Bucket List - B - Predictable and shallow plot but this movie wasn't about the plot. I went to see a comedy and Morgan Freeman and Jack Nicholson being funny was good enough for me.
Charlie Wilson's War - B - Like Depp and Jones, Tom Hanks does his usual thing. It is Julia Roberts who created a historical figure I believed. Oh. And I learned something about what happens when good intentions run out of money and political support.

I've been doing uhhhhhh, nothing else except some medical things and the few knitting events I am able to get to on good days. That really perks me up though and I feel bright eyed and bushy tailed spending time with the girls and some string. I wish I could do it more often. The most limiting factor is sitting and standing. I have to use my scooter exclusively now unless I'm with Bobby. I can't rely on chairs being high or stable enough for me to get out of. Loading my scooter is an effort too. I always have to sit and rest before driving away - which takes up a handicapped spot but hey - that's part of my problem, isn't it?

Physical Therapy is on hold for several weeks. It just wasn't productive. I addressed the fatigue issue with my therapist, wondering if I was befitting at all and wouldn't my insurance dollars be better spent when I was stronger and it could actually make me better. She agreed. Besides, I have had an evaluation by a Physiatrist who has an opinion that I may be able to loose the brace - something I am taking with the biggest grain of salt I can imagine to prevent disappointment. Today's medicine is amazing though and I have to let the professionals guide me, right? I may be a nurse, but I know nothing about this stuff and am trying my darnedest to accept good news.

Look how the brain surgery went.

A New Year

2008-01-01T09:48:00.000-05:00

I thought starting 2008 would be some how very profound for me. It isn't. We went to bed last night and Bobby reminded me it was New Year's Eve. It is? This morning we wished each other a bland Happy New Year and went about out daily routine.

That's what we do every year.

It's nice to be normal again.

Elsewhere on the home front, I'm getting more and more tired. Tired isn't really the right word. Fatigued is what they say in the medical literature, anywhere up to 3-6 months more. My body still feels every thing. All the sensations are still there(yaaaay!) but the weight gain from the steroids - or other factors - seems to have thrown my balance off. My feet feel like lead and I have to walk veeeeewy cawefully (as Elmer Fudd would say). Leaving the house is precarious at times. I've been resisting those naps still. Getting my brace off during the day is a pain and I tore up a sheet the time I tried wearing it to bed. I'm "resting" I keep telling myself, but I do that all day really. Computer, TV, rarely knitting. My knitting is weird right now. The awkwardness is there too - heavy. I prop my right elbow up on a pillow but my hands still make the stitches a bit loose. I think I need to use one size needle smaller right now.

Last week I screwed up and got my bloodwork Wednesday instead of Monday. I'm supposed to call the nurse Wednesdays about it anyway and I have other errands to do that day. I goofed. They faxed the results to me and it was completely normal, my nurse didn't even call me about it. I guess I didn't commit such a bad sin after all. Then yesterday the labs closed early for New Years Eve not just New Year's Day mind you. So I gotta wait till Wednesday again :^P

My cognitive function is . . . interesting.

I feel I am thinking clearly although some multitasking is difficult late in the day. That's an old problem that hopefully will leave with the fatigue. Typing is a bear all the time though. My fingers don't cooperate with what goes on in my head. I think some of that is physical. But my sense for sentence structure and order seems a bit off to me. Sheesh. Proofreading is even a nightmare. Thank God for spell check too.

Do I sound like me?

I missed wishing a Happy Christmas to everyone. Mine was truly excellent this year.

I bought a lot online
Nothing was bought just to "get them something"
We wrapped as we bought, not at 4 in the morning Christmas Eve
As usual, presentation is everything - I love to decorate packages
I got Bobby two great gifts, knowing he would understand. He said "I have you."
I had a good long Christmasy talk with my sister in California via webcam
I spent time with my Dad on Christmas Day instead of New Years
We got to actually visit and converse with my local sister's family Christmas Day
I had the stamina and energy I needed Christmas Day
At our periodic extended family breakfast the Saturday before Christmas, I made sure to spend time with Aunts, Uncles and cousins.
Our only decorations were lights on our big spruce tree outside with lights until Bobby surprised me with the indoor one and hung one ornament(our favorite) Christmas Eve. I love him.
We went through two charity light drives this year The Winter Lights Festival in Seneca Creek State Park and our now traditional "Uncle Bobby's Starbucks hot chocolate" lights with my sister and her granddaughter, this year at Columbia's own Symphony of Lights.
And yes, I got presents. Thoughtful meaningful gifts. My husband especially filled my knitting world with abundance from several different local yarn shops and both sisters chimed in. It was the knowing what I am obsessed with these days that touched me most.

Maybe Christmas, he thought, doesn't come from a store.
Maybe Christmas... perhaps... means a little bit more!

The Narrator
How The Grinch Stole Christmas by Dr. Seuss

Now What?

2007-12-23T07:16:00.000-05:00

So.

It's our first real day off, since Bobby worked yesterday. I'm wide awake and up anyway. Go figure. I had a leg cramp to be fair and putting my boots on and getting out to walk it off was the only way to get relief. Much better now.

I'm sitting here eating some luscious fruit from my sister in California - ripe pear and a sweet perfect orange. I've been doing a lot of junk food lately so she has really done me a great service here(thanks Debbie!). Yesterday we talked on the phone for an hour and a half and used our web cams. It is just so cool to be able to see your sister 3000 miles away in this modern age. Getting my PC to talk to her Mac sucks though - we tried lots of things and finally we just talk on the phone and use Yahoo for the camera. We're okay though with free long distance as long as the phone batteries don't die :^p

She had me open my other Christmas present. It was a The Wizard of Oz music box that plays "King of the Forest". It's one of our favorite and most quoted scenes where Lion sings about Courage.

Courage! What makes a king out of a slave? Courage!

What makes the flag on the mast to wave? Courage!

What makes the elephant charge his tusk in the misty mist, or the dusky dusk?
What makes the muskrat guard his musk? Courage!

What makes the sphinx the seventh wonder? Courage!

What makes the dawn come up like thunder? Courage!

What makes the Hottentot so hot? What puts the "ape" in apricot?
What have they got that I ain't got?

Dorothy, Tinman and Scarecrow: Courage!

You can say that again! Huh?

Day 33 - Stick a Fork in me - I'm DONE !

2007-12-21T12:30:00.000-05:00

7 weeks.

33 treatments.

I'm very fatigued physically - but mentally I'm so psyched that Radiation is over. No more 5:30 alarm and driving to Hopkins Monday through Friday. Woooooo Hooooo!

It'll take a few weeks for the fatigue to back off, then the steroid taper down as the effects of this final push of radiation (it was increased and focused this week) wears off. Then it's follow up with a higher dose of just my oral chemo five days at a time later.

I can handle that.

I've been blessed by good fortune throughout this. Bobby's employer granted him the time so he and I could do this without outside help. When we unexpectedly did need help my sister moved in for nearly a week and kept me on schedule. I was spared the need for IV chemotherapy, a much more difficult road. I had a good drug that obliterated the nausea associated with my oral chemotherapy. My blood counts have been stable and I've had no major reactions to my treatments. We have good medical and prescription insurance. Except for my initial introduction into the radiation process, my contact with all medical professionals has been exceedingly smooth, competent, attentive and pleasant.

Go to The Johns Hopkins Hospital if you have cancer.

My Surgeon - Dr Alessandro Olivi
Professor of Neurosurgery and Oncology
Director of Neurosurgical Oncology
- The Scarecrow - my brain - who started me on this journey by convincing me I just found out I had a brain tumor.

My Radiation Oncologist - Dr Lawrence Kleinberg
Associate Professor Radiation Oncology, Molecular Radiation Sciences, Oncology, Neurological Surgery
Co-Director Steriotactic Radiosurgery
- The Tinman - my heart - who turned from shy guy to the one I always wanted to hear telling me I'm doing so well.

My Neuro Oncologist - Dr Stuart Grossman
Professor of Oncology, Medicine and Neurosurgery
- The Lion - my courage - who convinced me taking a drug proven for a related tumor but not starting research on my type of tumor until 6 months was right for me.

Cancer affected my family big time in 2005. My road had been a piece of cake in comparison so far. I believe they had a hand in that.

My mother passed away in November of 2006 at home with us. Immediately I felt a strong urge to take care of my own neglected medical issues. The signs from her were personal, specific and at times quite overwhelming. Or seemingly coincidence. Like being disconnected from a clueless customer service rep then calling a different representative who knew exactly what to do. God is busy. He knew I'd trust my Mom.

Thanks Mom.

Day 31 - 2 more days!

2007-12-19T17:11:00.000-05:00

Two. A peace sign. That's what I held up right after treatment today. It made my therapist Kim laugh. She's my favorite and the one who started me on this journey. I'm so psyched to be done with this. And ready for phase two.

And Christmas.

4 more. . . but who's counting?

2007-12-17T23:41:00.000-05:00

My appt with my Radiologist was canceled today - he's away. This was a surprise. I hope he's okay because another physician is going to do my last appointment tomorrow instead :( I needed to speak with somebody about some increased brain swelling symptoms today though and saw my usual Oncology Fellow. He upped my steroid again. I should be back on an even keel by Wednesday hopefully. I've put on 10 pounds - probably fluid cause my radiation mask was tight today.

Tomorrow I have my last visit with my Chemo nurse and make appointments for follow up with my Oncologist now.

Life goes on :)

Day 29 - 5 to go

2007-12-15T15:40:00.000-05:00

Gee I'm sorry I've been absent. My sister called me today and reminded me that I've been leaving folks hanging.

I'm fine. Really. My husband and I have had other interesting stuff not related to me going on for two weeks and hunkered down to ourselves for a while.

My hair stopped falling out. I'm a surry with a fringe on top, well top and right - which makes my hats a little lopsided. I still need that trim. My bangs came in, but I haven't messed with them much - hat on/off on therapy days messes 'em up and they need a trim before I wear them I think. I'll set that up later.

My blood counts are superb. Great White counts - no immunodeficient/infection worries. Great Red counts/Hemoglobin/Hematocrit/Platelets. Everything is "within normal limits" as we say in the medical field. Cool.

My face blew up like a big round moon two weeks ago, but that is because of the steroids. It'll go away after the effects of the radiation/brain swelling go away and I stop them. Hopefully I'll begin to regain the function I've enjoyed off and on since the surgery :) It comes and goes - but it's still there.

One of the guys in front of me Graduated on Thursday. He was late. They said he didn't want to come in. I have no idea what was up with that. I have enjoyed the folks I have met there. Helped a new guy get started - but I will not miss going every day. I plan to celebrate Friday. I may bake brownies for everybody. Yeah. Brownies.

I do get bushed. Just showering and dressing can wipe me out. I don't take naps - I rest. I tend to shut down quickly - and recover just as fast. The end of the week is roughest as the fifth day in a row of radiation draws near.

::speaking of which::

Did I mention I only have one more week? That means I'll be done before Christmas. Thanks Santa.

Day 18 - Poppies will make them sleep . . .

2007-11-30T14:35:00.000-05:00

Poppies... Poppies. Poppies will put them to sleep. Sleep. Now they'll sleep!

The Wicked Witch of the West

When they said I would get tired with the radiation - they weren't kidding. I finally "hit the wall" a few days ago and now need that nap I've been avoiding. My eyes just won't stay open and my head falls down to my chest. A couple hours though and I've right as rain thus far.

I have a brain cancer buddy after me now at radiation. He takes the same treatment drugs, has seizures, arm paralysis - the whole bit. Kinda cool. I didn't feel the need for a support group since the whole brain tumor thing wasn't new to me. Maybe I will later, who knows. I knit with a group on Wednesdays at The Claudia Mayer Resource Center (where I ordered the bangs) and know I can avail myself of their services if I want to. The girls already fill some of that camaraderie I guess. There are other friends and a family member who deal with cancer that I draw from too.

I'm good for now.

The sinuses are on the mend. Just stuffed up big time. I didn't take my nasty germs over to the cancer center on Wednesday so I didn't get to pick up my bangs yet. I really am aware of those immune-suppression issues. Tuesday I wore a mask while in the waiting room to see my Medical Oncology RN. I was coughing because of the draining crap and it makes everyone worried naturally. Someday that could be me.

Now then, lemme explain something.

Radiation to my brain causes swelling(or fluid) to collect in my skull. This puts extra pressure on my healthy brain (no joking please - I do have some). That pressure(intracranial pressure) affects how I walk/balance, use my right arm, and think/speak. Here's how it goes:

More weakness on the right side - the steroid dose goes up - three days to adjust - my body improves
The steroid gives me side effects - they back it down - three days to adjust - I get weakness on the right side

It's a real Catch 22. It is also something I am just going to have to get used to for probably a good long time I think. Nobody has any answers for me when I've asked things like "how long will I be on steroids" or "will I get the function back eventually" or "when the tumor dies, does it make room for the healthy brain to expand again". They just don't know. I remember from my days in the OR. There was a line in the OR permit that read, "Medicine is not an exact science . . . How true. In other words

They don't know.

Ooooo! Ooooo! Today's funny thing. This morning I had an "I can moment" and announced to Bobby that I can wiggle all my toes. He says to me, "Can you braid hair?"

Get it?

Day 14 - drip . . . drip . . . drip

2007-11-26T19:17:00.000-05:00

If you gross out easily ~ avert your eyes.

The lovely warm Autumn winds blew a lot of leaf mold into my already dripping sinuses it seems. Or something. A constant slide of goo is in the back of my throat. It smells and tastes foul, and keeping food, drink or gum in my mouth is the only way to help it. A run of the mill sinus infection has flared up and I'm on Azithromycin, a wonderdrug that has worked for my sinus ick before. My immune system is still in good shape so there should be no problems there. I worried about lying flat for my treatment today, but I asked the techs to give me a minute to clear things out first (Ewwwwww!) and that worked just fine.

At least the rest of me is still feeling great, a bit tired now and then. Last Monday they decreased my steroid, Decadron. By Thursday I began seeing the return of right sided weakness and upped my dose again as they said I could. The change in the medication sat my energy level on it's heels for Thanksgiving at my sister's though. I didn't need the tryptophan to feel like a nap. Still. There was a lot to be thankful for this year, eh? Amen.

Now that the Decadron has kicked back in ~ I'm back again. The see-saw thing is weird, but I noticed some new things.

I CAN

Wear my bifocals, for some reason the progressive lenses make sense in my brain now
Click my fingers rapidly back and forth in even rhythm, couldn't get a good right click at all before
Take the lid off a cup of coffee without the fear of the dreaded "McDonalds burn"
Reach behind me into the center console of the car without scraping the heck out of my arm groping for things and actually come out with the thing I went in for ~ first try
Easily reach for and buckle my seat-belt on the passenger side (although I still let Bobby, it's kind of a thing with us)
Put the recliner up and down without trapping my arm in the couch or the end table

Cool.

Hair continues to run away like a bat out of hell. I get a mug full every time I take a shower and am seriously looking like a monk with lots of thinning on the rest. Shaving my scalp is not recommended, but I'll probably get a buzz cut soon, this long stuff all over creation is veeeeery messy. I got a call today that the set of cute bangs that I ordered came in already. I'll be able to tuck them right up into the front of a hat and be at the height of high fashion hair design. They even make a ring 'o hair like a hula skirt to wear with Velcro and a hat. Supposedly it's not as hot for the summer and can be attached directly to multiple hats. Cute! My health insurance will cover a wig. I'll have to find out the details but hey, it could be fun.

We can all use a little fun.

Day 21 - Bye Bye Hair

2007-11-21T07:32:00.000-05:00

Good thing I'm liking the hat look.

This morning when I got up my scalp was a little tender around my incision area and I had Bobby take a look. "A little pink" he said but not inflamed. I just wanna keep an eye on things ya know. Can't be too careful and if my skin gets sore I want to protect it. I looked in the mirror. My hair grew in nicely. I might be able to get away with no hat on Thanksgiving at my sisters' house if I use the curling brush and sweep it like my hairdresser Julie does. Lemme try it . . . I got a clump of hair in my fingers.

Just like they said. All at once. It's mostly going from the area of my surgery, but the rest of my head too. I tried it. No eyebrows slid out, but I didn't tug on those very hard. I wish I could have a nice smooth head. That's my only gripe about this. The incision will make me lumpy. Maybe a tattoo . . . nah. Bobby and I have a law against tattoos, even temporary ones.

I am however going to get my best friend one for Christmas. She is getting a blue penguin on her ankle with my Godson's initials on it. How cool is that? John would have loved a tattoo. I wonder what he would have gotten on his body? Where? At 15, the possibilities would have been amusing. I'll have to ask his Mom if he ever talked about it. We go shopping for the tattoo artist soon. Know a good one?

I'm feeling well - ignoring my need for a nap, eating well - need to drink more water, and walking a lot more if a bit awkwardly in this still adjusting body. Treatment itself is a snap. Scheduling this week has been weird. Because of the Thanksgiving holiday, the plan was go in Sunday through Wednesday and everybody off the four day weekend. Cool.

It's Wednesday and at 7AM they canceled my appointment.

My beloved 6EX Winkies are down with the flu or something and aren't expected to be up and about for the rest of the day. It may seem strange, but I want my radiation dammit. Those Winkies are marching those rads in and killing those totally useless tumor cells, thank you very much. Oh well. Five days off shouldn't impact the outcome of my therapy, right? Still, I just emailed my Nurse. I'll come in on the weekend again. If there are any more delays I'll have to go Christmas Eve.

Bummer.

Day 12 - Salty Tears of Joy

2007-11-16T20:30:00.000-05:00

So much has happened.

Since Monday my sensation on the right side has dramatically returned again.

It's interesting to go to Physical and Occupational Therapy and try to explain to these professionals just how it is that my body can do things it couldn't do the day before - without a gradual build up of strength of that particular muscle set. Suddenly I can hold a door open with my right arm and walk through at the same time. I don't hesitate when I reach towards my face for fear of poking myself in the eye or nose. I can reach behind me and slip my arm in my coat sleeve easy as pie because the subtleties of the lining and seams make sense to my arms. I'm putting my right heel down when I walk.

Perhaps I should explain.

Proprioception is returning to my body along with sensation. It's something most human beings aren't even aware they experience. Your body holds just enough tension in a muscle to keep a body part in position - without thinking about it. Today I sat in a restaurant with my husband and rested both elbows comfortably on the table, cradling my chin. Wednesday at breakfast I couldn't do that. My right arm would slide sideways and I would have to tense the shoulder and forearm to keep that from happening. Quickly it was uncomfortable and I gave up. I always thought it was because the muscles were weak.

Nope.

Muscle recovery doesn't happen that fast. If anything, I've been really lax at my upper body exercise the last few days. Yet the improvements continue. Sometimes I realize I've done something amazing like push up my glasses without looking at the finger first so I don't stick it in my nose - and just cry. Sob even.

Oh yeah. My mentation is waking up too.

I had a regular PCP appointment and my nurse (hi Jess!) says to me "You don't hesitate and think about what you're going to say anymore. You're more articulate. Even the sound of your voice is different". To have her notice that meant more to me than my new ability to get up on the exam table without two nubian slaves and a crane. And there are other things. It's like I've had a head cold for a few years and can finally breathe. The tumor pressing on the rest of my brain was wearing me down veeeeeery slowly - but I was less of me.

I'm baaaaaa - aaaack.

Wednesday was my Birthday

It went something like this:

Up at 5:30 - I'm thrilled to be 50. At 34, I actually didn't think I'd be here.
Treatment at Hopkins
Appointment with Radiation Oncologist - all systems go
Labwork
Lunch with Bobby at Eggspectation
Physical and Occupational Therapy
Pick up my car with installed remote starter ( BD present from my Boo - for those cold winter mornings)
Trying to speed-knit the rest of my Dad's hat in between all of this
Dinner and birthday doings with the family here at our house
Really big wish while blowing out the candles

25 Steps

That's how many there are up to the observation platform in the UTZ Potato Chip Factory in Hanover, Pa. Wanna know how I know that? I climbed 'em today. Me. Gimpy. Scooter girl. It was the only way to see the self-guided tour without calling a day ahead. With a hand from Bobby up I went. Half of the steps were with my right foot.

I went to the bathroom and wept.

Bobby was worried and stuck his head in but I reassured him I was sobbing because I climbed the freaking steps and wasn't even out of breath. We toured the entire length of the factory on foot, stopping at each "push this button" to hear the delectable story of my favorite chip. I was jerked into reality on the long walk back down the hall though, and had to sit a spell with my numb legs up on a chair, munching the freshest free bag o'chips in the land. Ahhhh! UTZ.

Going down was not pretty. Two Tylenol for the arthritic knees please, I forgot that part of why I don't do stairs.

It was Bobby's idea to stop there on our impromptu autumn drive to where my Great Aunt Ola and Uncle Charlie lived. I can always count on it being beautiful this time of year and the nostalgia is a sweet bonus. The current owners have put on a two story addition and a wooden "compound" fence since the house sits directly on the highway - the front yard taken by public domain long ago. It's a busy intersection and it appears the family has children, or possibly a home daycare. Aunt Ola and Uncle Charlie could never have the children they longed for and doted on my mother, their goddaughter. They would have been pleased to have the place full of kids. If you'd like to see the house, go to Google Maps and search "Bonneauville Pa Ola". Click on "Satellite" in the upper right hand corner. I've written a bit of history there for the world.

On to Gettysburg for dinner at McClellan's Tavern in the historic Gettysburg Hotel. We enjoyed a quiet, well prepared, early dinner. I discovered I can rest my right elbow alone on the table and cradle my chin as I gaze at my Boo.

brain tumor, paralysis, seizures . . . life is good.

Day 8 - nirvana

2007-11-12T20:58:00.000-05:00

I've signed up for a massage every week at a nearby spa and it's one of the better things I've done in my plan. I've ignored most of my pre-existing pain from the years of paralysis. My right side is weak and the left side must compensate. Both sides fight so I stay upright. Relieving that seemed to make sense in order to tackle other priorities for my body. I've been twice now and I tried a different therapist, hoping to find the right match eventually. She already had my history so I talked briefly about my desire to work on my right leg mostly, because aligning that seems to fix the shoulder too.

Did you ever sit in one of those Shiatsu chairs at the mall? She slid her arms under my back and in one minute I swear I felt better. There were other amazing things in store for me. While doing Swedish massage on my right leg I could feel some things I never felt before. On my upper back the myofascial work felt like she was going to push my shoulder blade right through to my chest. It should have been painful. I just breathed and as my sister says, just went to my happy place. Here's the weird thing. When she switched to the left side, I experienced pain with less pressure. The brain is a complex organ.

Today my right leg is about an inch less in circumference.

I kid you not. I noticed it right away the next day when I put on my brace. The leather strap around my calf slid in an inch more and I can slide my finger up and down all the way between the bar and my leg on the side. Even at the top. I'm so psyched. I'm walking upright and my balance is off so I have to be careful. Luckily I have an appointment for a new brace next week. If only insurance companies recognized the value of massage therapy for those who truly need it for medical conditions affecting the muscles.

::sigh::

Day 7 - A Bit of a Scare

2007-11-11T20:25:00.000-05:00

Friday went swell. The routine is getting settled in and we are developing a ritual. I'm not nauseous thanks to my return to the Anzemet every morning and my appetite is normal. Puking ain't fun. Yup. All systems are go. But I've got to stop running on empty. I feel so good all the time I'm not resting like I swore I would. Then I run out of steam at times when I'd rather be doing something. Gotta get a handle on that.

Friday night proved it.

My therapy can cause bowel concerns and when I saw what looked like a bowl full of blood I had a panic attack. We called Hopkins, went to the hospital and all is well. It's just a pain is the ass (snort) and will be dealt with swiftly. Reality has reared it's ugly head though. I'm scared. The side effects of this are serious and I am paying a lot more attention to the guidelines now - before they become a necessity.

Prevention is the key, eh?

Day 4 - A Basket of Goodies

2007-11-08T20:33:00.000-05:00

Well now. It seems that Dorothy here has a new cast member. Remember her basket. In it she kept all the things she needed for her journey. A picture of Auntie Em to show Professor Marvel. A hankie to dry the lion's tears. The Tinman's oil can in case they needed it later (and they always did). So now I have a basket. And in mine is my newest best friend ~

Anzemet.

Remember all that high-falootin' talk about not having any nausea? I've been taking a preventative strike against nausea with that drug until today. Today I didn't take it to see if I was going to be able to go with one less drug in my system as desired by me (and directed by my team) - and barfed in the bank. It's been a queasy day of nibbling and napping and medicine, but I think tomorrow will be back on track. I seem better if I'm nibbling. No wonder there are baskets of crackers, hard candy and mints all over the treatments areas at The John.

I'm sure I'll need more in my magic basket before this is over.

Until then, I just pray the nice people who invented Anzemet got all the lemon meringue pie they deserved.

Day 3 - Munchkins

2007-11-07T14:54:00.000-05:00

On Monday and Tuesday I will always have appointments after treatment, but the rest of the week it should be smooth sailing unless something pops up when I check in in the morning. I don't even have to leave the level we park on. Today I was in-and-out in 30 minutes. Schweeeeet!

Johns Hopkins has a very efficient system for us. I have an orange "Hopkinscard" that I scan as soon as I get in the door of the Sidney Kimmel Building where everything takes place. The machine spits out a sheet of paper telling me each appointment I have for the day, where they are located, phone numbers at those departments, and a place at the bottom for my vital signs for the day in case I need them taken. I can then proceed to do my thing without worrying that I've forgotten to check in with so-and-so or they can slip in surprises like extra lab work if necessary. They won't call me at home, afraid I'll miss a message telling me to come in early or stay late for something important.

Hopefully the system works.

When my sheet said to see Mr.R in Registration on Tuesday - I put on my happy face even though I thought I wouldn't have to go up there that day. Some days computers are cranky, and Mr. R is one of the Munchkins (yup!) who has to kick his machine sometimes. That was the sad truth on Monday and Tuesday. He had a room full of people and a scanning machine that was just not happy. Between setting up folks for their visits and hauling his butt out of the room to reset the kiosk - Mr. R was lookin' low by the time he got to me. But he knows I'm patient and his smile is genuine for me. "You need liquids, get some water", I say. "I got tea" says he, and soon after he's slurping away and the raspiness I heard with the previous patient leaves his voice. We've done this a few times now, and the exchange is brief. Hand him my card, verify my birthdate, sign here . . . and tell him I appreciate everything he does.

"And keep drinking that tea now."

He laughs and says "You have a good one Ms. Martin.

Now I know saying things like have a good one and have a nice day just roll off the tongue for most folks. But I try to make people, especially employees who are just doing their jobs, feel they are not getting the remote control expression from me. Sometimes I hit it, sometimes I don't. With Mr R. I think drinking tea may be a connection between us, who can say. Something he can look forward to. To make him really smile when he sees my name pop up on his screen. Maybe he'll give a thought to what he'll say to the next person.

The Good Witch of the North called me today just to see how my first few days of treatment went. How many insurance companies have this service I wonder? Now that I'm safely underway, she'll be more in the background and we'll talk again around Thanksgiving, but I know I can call her anytime for anything. A big plus for me is she has a background in Oncology Nursing. We talked for about fifteen minutes about the last few days and my follow ups on a few things. Today when we finished I told her I had to go now. I'm fine now you see, Glinda - on my way down the yellow brick road and you should call another patient who needs you now - because you are good at what you do.

Day 2 - piece 'o cake

2007-11-06T19:40:00.000-05:00

So now I'm over the 1st day of school jitters. Things went a lot smoother as far as actual treatment process time today. I had a whole passel of students to observe and they were not in the way at all. One got to take off my head apparatus at the end. I really must post a picture of the very cool hockey mask that was molded to keep my head in perfect alignment for the Winkie-rays to do their thing. It resembles a cross between a strawberry basket and the water tube face from the movie The Abyss if you remember that movie.

I'd write more but Bobby just showed me dinner. Left over Chicken Picatta from dinner with Sul and Jim at Carraba's Saturday night and fresh pasta with some kind of sauce he concocted. MMMMMmmmmmm!

Follow the Yellow Brick Road - Day 1

2007-11-05T17:50:00.002-05:00

Cast of Characters:

Dorothy Gale...................................Me!
Toto.................................................My faithful husband - where I am always home, no

heel clicking needed

The Wicked Witch if the West.........This fr!@#$n tumor

The Wicked Witch if the East.........She started as the WWotW, but I like her better,

so I squashed that image

Glinda, The Witch of the North.......My Aetna insurance nurse - waving her wand

over my smallest troubles

The Scarecrow................................My surgeon - my trust in him brought me to this

Yellow Brick Road

The Tinman.....................................My Neuroradiologist - it took an oilcan to get to him,

but he has a heart

The Cowardly Lion..........................My Neuro-Oncologist - "Put 'em up!...I can fight tumors with

one paw tied behind my back.

The Emerald City............................A green good luck talisman I wear for treatment
The Ruby Slippers...........................Decadron - protecting my brain and boosting my

right side in the process!

The Winkies....................................The rays from my beloved 6EX treatment machine,

marching in for battle

The Bucket of Water.......................Temodar, "I'm melting . . . MELTING!

. . . Oh what a world

. . . who ever thought a little pill like you could have destroy my beautiful wickedness
. . . (Ding Dong the Wicked Witch of The West is Dead)

I used a scene with some of these friends during my few short minutes of therapy today, in fast forward.

In my head I saw Toto leading Scarecrow, Lion and Tinman up the mountain to the Witches Castle. They bonk three Guards over the head, steal their uniforms and sneak in to the castle to free Dorothy. The Guards chase them down at the command of the Wicked Witch of the West, but a carefully thrown bucket of water melts her flat. Turns out the Guards were under a spell and are pleased as punch to help Dorothy out.

So you see! Radiation and Temodar are my secret friends. I was absolutely calm once I got in the door. Last night was a bit nerve wracking, but I had everything ready to go for this morning so I didn't have to think about anything. In the shower this morning I worked out the details, made my plan and planned my visualization for treatment. I even changed the Wicked Witch, so I could melt the tumor. (Besides. I have now met her properly and will deal with that nurse often)

I'm not sick. I'm not tired. I ate a hearty lunch and went to a yarn shop.

Life is good.

Did you know the Guards of the Witches' Castle were called The Winkies?

They sing the Brain Tumor Zapping Theme Song.

The Winkies: [singing repeatedly] Oh we oh, yooo ho!

The Witch of the East

2007-10-31T11:10:00.000-04:00

It was bound to happen. Somebody finally pissed me off. Thing is, she didn't admit that I fell through some kind of crack in the floorboards under the well oiled machine and an appointment got screwed up somewhere. Even when I asked point blank what happened she ignored me. Repeatedly. She skirted my question and restated my new appointment information. Told me she had to go now. I can accept that things go wrong with scheduling when there is so much to co-ordinate. What I have a hard time with is ducking responsibility. So unfortunately I have dubbed a nurse the Witch of the East.

Bobby already thinks she dresses like Morticia and I think her makeup makes her look like Sylvester Stallone's mother.

Still. I don't wish a house to drop on her.

Poppies!

2007-10-29T19:22:00.000-04:00

Bobby came home from the grocery store with these tonight.

Periodically he does that. Just because

he loves me.

My team continues to impress me. Seems like getting approval from insurance companies for certain drugs can sometimes be a bother. Paperwork must be submitted! My rad/oncologist nurse and My Pharmacist Roz (yes, I have a pharmacist) worked together to get my drugs signed, sealed and delivered without a hitch ~ much the same as my MRI snafu which was painless for me. They worked it all out over a period of three days with shipping overnight tomorrow at no extra cost. I was even approved for a larger amount of a drug in one case, impressing the pharmacist.

FedEx should bring me the goods tomorrow.

The Noive!

2007-10-25T17:46:00.000-04:00

Hunk: Now look here, Dorothy, you ain’t using your head about Miss Gulch.

You’d think you didn’t have any brains at all.

Dorothy: I have so got brains.

I feel so much better. Last night I announced to Bobby, “I can wipe my feet on the front mat”. Both of them. Since my surgery we haven’t had substantial rain and I haven’t felt the need to do that. But yesterday Bobby and I came in from a long and tiring day and without thinking I wiped my feet. My weaker right leg moved back and forth, picking up that right foot and placing it squarely down in front of where it had been - nice as you please. Then I swiped it behind me and shuffled it back under me, putting my weight on it while simultaneously picking up my left leg and repeating those steps with it.

I wiped my feet!

I’ve been feeling rather depressed about losing most of the amazing physical gains I had on the right side during that first week after my surgery. I still have some increased sensation, but a lot of the awareness of my body parts, called proprioception, has faded as mysteriously as it appeared. Last night’s little rain episode was a big boost.

Did I mention that yesterday was exhausting? I got the call from my terrific insurance nurse Tuesday with the go ahead for my MRI. She just caught Bobby and me on the way to Hopkins We were able to schedule it for yesterday along with two other appointments and now I believe we’re DONE until treatment starts. Wahoo! Every time someone said, “You’ll have to schedule a blah blah blah before your treatment starts” I said,” Can I do it today?” So rather than go back again, this was our day (times approx) for a CT scan.

8:45 Group teaching for oncology patients
10:30 Met with my daily oncology nurse Kim
11:30 Met with radiation oncologist’s nurse for teaching and to discuss treatment plan
12:30 Met with both of the medical oncologist’s research nurses
2:00 Bloodwork
2:25 Late lunch at the hospital in an actual restaurant with a waiter and a sushi bar
3:15 Super MRI – New and improved! With bigger magnets and louder sounds! Delayed, but not as long as they said.
8:15 Home! With Starbucks and Chinese in hand.

I have no idea what anyone said to me. Oh, I have all the materials, and I’ll go over it and Bobby and I will decipher it all and remember. But still. Haven’t any of the professionals there heard the expression “less is more?” In the group class, the person talked so fast I was hearing her, but not absorbing any of the details - just sort of zoned out. A lot of her subject matter was aimed at folks with IV chemo. I felt guilty sitting there with my radiation and oral chemo with lower side effects self.

One thing is for sure. I feel safe. I feel they all know what they are doing, have been doing it for years, and are very up to date with the way it should be done today. They are confident in themselves and in their abilities. They can make decisions, adjust someone else’s schedule, and empower a pissed off lab tech to draw my blood painlessly with one stick in my “bad” arm even though I came in the back door with my paperwork and lab slips in my hand. They'll do anything to get me better.

People at Hopkins have so got brains. And hearts. (and homes . . . the noive!)

Why, oh why can't I?

2007-10-23T19:42:00.000-04:00

How is it that a gigantic institution like The John can't consolidate their department billing? Take the general category of "Radiology". Inpatient doesn't speak to Outpatient who doesn't speak to Radiology Oncology who doesn't speak to Radiotherapy.

Or something like that.

Thank heavens for a friend's husband who gave me a clue a while back, and I have a wonderful nurse case manager at my insurance company who is dealing with this for me. I lined her up before my surgery after hearing about his woes and how a case manager helped him. She's working directly with the lovely lady in the financial/insurance department at Radiation Oncology to make it happen/get the approval.

I just waited for the phone to ring today.

For twenty seven years I did things like that every day without batting an eye because it was part of my job. Yes. I was aware that what I did was sometimes that one thing that made a difference to a patient that day. They say what goes around . . . comes around. Good things will happen for those two ladies.

My appointment is tomorrow.

The Tinman

2007-10-18T21:13:00.000-04:00

Oil Can. -The Tinman

The squeaky wheel gets the grease. And the patient who calls her nurses gets her Radiology Oncology appointment. At 4 PM Tuesday I was still waiting to hear about moving my appointment up from November. Fed up, I left a message at the Radiologist’s office that I was seeking a new radiologist. I emailed my surgeon’s nurse practitioner the same. I left a message for my contact nurse with the medical oncologist. I voiced my displeasure to my insurance company RN case manager.

Wednesday I got a pleasant call that my appointment with the Neuro-Radiologist had been moved up to this Friday morning.

So Friday I dance with the Tinman since it took an oilcan to get to meet him.

It's a Twister

2007-10-16T12:38:00.000-04:00

Better get under cover, Sylvester. There’s a storm blowin’ up, a whopper.

--Professor Marvel speaking to his horse as the twister approaches.

Last week I got my results on the part of the tumor I did have removed. The other part of the tumor could not be removed because it would cause more paralysis. That will need radiation for sure. Every day Monday thru Friday (because brain tumors are off on weekends don'tcha know) Even with six weeks of daily trips to Hopkins, continuing my physical and occupational therapy may actually help keep me on an even keel stamina-wise. A regular schedule seems to be the key. Regular meals, naps, exercise etc are good so my body doesn’t slip further. Radiation’s biggest side effect is fatigue. Fatigue is a polite word doctors use for feeling like crap. How much? Don't know. Right now I’m in the habit of 30-45 minutes of upper body work every morning before I leave the bedroom. Hopefully I can keep that up since mornings are best for me anyway.

Now for the interesting part. My type of tumor isn’t that common. It does however have a “marker” in the genes of the tumor which indicate I may respond very well to treatment. Cool! Who need those bits of Chromosomes 1p and 19q anyway?!? Having that marker also makes me a great candidate for oral chemotherapy. With other types of brain tumors, it is given at the same time as the radiation and is the current best treatment available. For my tumor it is optional. It’s a pill, very little side affects if any and since it is optional for me, I can choose to stop it if I do have a bad reaction to it.

The most frustrating thing for me right now is waiting for the appointment with the radiologist. Grrrrrr! Seems he has to approve moving me up in his schedule, as my surgeon and medical oncologist have requested. I finally insisted on the next available at least, so I have something in place that can be cancelled when/if he okays moving the appointment up. Yesterday marked 1 week of waiting patiently for a date

So.

That’s what I’ve been doing the last week. I was seeing my surgeon, the medical oncologist, being evaluated for physical and occupational therapy, and attending my great-niece Megan’s 10th birthday party. Oh! Throw in a four day knitting convention during that time. I wasn’t sitting on my butt wringing my hands.

And I need a nap.

P.S. Don't worry, no more painful seizures. I've had mild ones like I've had for years, but they are fewer than before - probably because I'm more diligent with my medications.

Of Course, Some People Do Go Both Ways

2007-10-09T07:54:00.000-04:00

Scarecrow said it. I'm doing it. After a truly nasty seizure, I've lost some of the gains I made. I've had partial incomplete seizures for sixteen years. The type hasn't changed thank heavens. No loss of consciousness etc. But this one was a bear. Over 10 minutes and painful. Screaming kind of painful. Scare your husband to death painful. Immediately after there were weaknesses which we checked out with the doctor on call. Since then I've lost a bit of that momentum, even slid back some in ways only I can notice. Boogers. But then I've been slacking too.

We get up at 12 and start to work at 1! Take an hour for lunch and then, at 2, we're done!

Jolly good fun! - theOzmites

I shouldn't be sitting here in front of the computer or on the couch knitting and "taking it easy" as admonished by everyone. Don't beat myself up you'll say, right? 'kay. It took me a while to set up the physical and occupational therapy. The first week was too much input to my body for me to handle emotionally. I probably should have been pushing myself more though in the last few days rather than just wait for the formal therapy to begin.

Today I go to PT and OT and get this trip down the yellow brick road started.

HUZZAH!

Bring Me Her Broom

2007-10-06T11:23:00.000-04:00

I'm going to be a celebrity. I am to be presented at a Brain Tumor Conference of some kind at Hopkins. They get all the big brain guys together and reveal my juicy details one by one. Think House only bigger. I wonder if they'll have popcorn? I'd love to put on a lab coat and sneak in. They'll put their heads together and have fun of trying to figure me out and where we go from here. It's not just one doctor saying, "Oh, you need an oil change". It's Dorothy, and Scarecrow, and Lion, and Tinman, and Toto too. Trustworthy folk with a mission.

I am the great and powerful Oz.

Even Oz can be put on hold though. I was all set to go to my regular knitting night. Waiting for a call regarding all this kept me from it. Grrrrrrrrr! On the positive side, I opened a new box of cereal, poured a mug of Frosted Mini Wheats, opened the fridge and reached in with my right hand for the milk which I also poured with my right hand. Picked up the spoon I aimed for and the mug and carried it in to the computer without spilling it and ate it. With my right hand.

Add those things to the list of things I could not do last week.

Ohhhh! Ohhhh! Ohhhh! I can tell which toe Bobby is touching! I could barely tell if someone was touching me anywhere on my lower leg. Now I can differentiate the toes.

Cool.

I can

2007-10-03T13:25:00.000-04:00

Here are a few things I can do today that I couldn't do the day of my surgery one week ago.

I can

hook my own bra
feel the water in the shower on my right side
cut my own steak and use a fork in my right hand
sit up straight without thinking about it
carry a glass of water across a room without sloshing it all over the place
stand up the first time I try from a cushy couch
walk to my mailbox
stand up from a chair that isn't up against a wall or braced by someone's foot - and holding on to someone's hand
brushing my teeth without bobbing my head up and down on the brush
use a regular restroom if I need to
open my front door with the key without jiggling to get it in straight
eat popcorn with my right hand at the movies and hitting the opening of the bag without fumbling in the dark
smile without feeling it's crooked somehow and wondering if anyone notices

And that's just the highlights.

Things have been happening to my body so fast I can barely breathe sometimes. I don't remember what it was like to be able to take care of myself. I have to remember that I'm supposed to take it easy for 4-6 weeks and not bend over and not lift things and not do the laundry and scrub out the tub and weed the garden and mow the lawn and go to The Home Depot to get the sand so I can build a patio out of some granite we have and . . .

I gotta sit down and just breathe.

Bobby and I were expecting to be setting up Homecare with an agency at this point and we're going to the movies instead. I went to my regular knitting group today and freaked out the girls. I know I still have a hurdle while I wait for a diagnosis, but geeze Louise. If my body isn't dragged down by all the paralysis I've been dealing with over the years? Mountains. I can climb mountains.

There's No Place Like Home

2007-09-30T22:50:00.000-04:00

It’s like I clicked my heels three times and repeated those words and the years have rolled back like Dorothy Gales’s house getting sucked back up into that cyclone.

There’s so much to say and the emotions are so, so overwhelming that I have to slow down because it’s bad for me to hold my breath when I cry with joy these days. I had brain surgery on Wednesday and came home three days later on Saturday in better shape than I went in. I’m giddy. I feel like Scrooge on Christmas morning. I can’t write much more now ‘cause I can feel my pulse rising. The tears won’t be far behind and then comes the sobbing and the screaming and the OH MY GOD I’M OKAY!

Thank you all for the prayers and notes you have left. I am not speechless or overwhelmed. I AM after all, The Goddess as Bobby constantly reminds me ;^D

Seriously. Thank you.

I know from personal emails that I didn’t enable all comments here at my brain blog. Non-Blogger folks probably couldn’t say hello. You can leave me a message now if you want to say hi.

Tune in tomorrow.

Happiness

2007-09-27T22:56:00.000-04:00

This is Bonnie's husband, Bobby, making an entry because Bonnie is still @ Johns Hopkins Hospital.

The surgery seems to have gone well. The surgeon is very happy with the results: removal resection of tumor with pathology report to follow.

Bonnie is in good spirits with minimal negative effect from surgery.

Bonnie is knitting again and expects to see everyone at Stiches later this fall

This is a true story.

2007-09-25T08:35:00.000-04:00

In 1991 I fell off a horse, had a concussion and lost about an hour of short term memory. A trip to the hospital and CT scan showed no intracranial bleeding so I didn’t need an emergency surgery. But then the ER doctor showed me my films and said, “We see this other shadow and recommend you see a Neurologist”.

There were dark fuzzy specks in the upper left side of my brain.

Scared shitless I went through all the testing. When finally referred to a surgeon I had a date in 10 days. Craniotomy. Shit. Pop the top. Biopsy the tumor and take it from there. I cried, went on a planned working vacation to sing in Georgia and then told my family.

I didn’t get a second opinion. I didn’t spend all day pouring over the journals and books seeking knowledge of this thing in my head. I didn’t see a Neurosurgeon who specializes in brains in a University setting and does more than a handful of craniotomies in a community hospital. I wanted to stay at the hospital and Operating Room where I worked and knew everyone.

I was foolish.

My surgeon told me the biopsy was negative. It was not a glioma, but gliosis. Inflammation. He used those words. Every year I had an MRI and every year he told me it was negative, the tumor hadn’t grown. But it could change. Any day now. It’s like a time bomb in my head and affects me every day.

After surgery I had paralysis and seizures. Physical Therapy helped, but I wear a brace on my leg, and over the years the muscles have atrophied. The anti-epileptic drugs made me sick and affected my ability to think clearly. They cost me my nursing and singing careers. I hated the “poor Bonnie” thing and hid my problems and fears well, developing a fictional cover story for what was happening to me and how afraid I really was. I’m a good actress and tried to make everyone else feel okay about this.

Well sort of, THIS is a true story.

Seems the brain surgeon biopsied the wrong area and my tumor was untouched. My original surgeon died and several years later I was encouraged to a see a new neurosurgeon to continue follow-up. He was puzzled. He put 2 MRIs up on a viewer, the first time I’d ever actually seen my brain. There was a big hole where some of my brains should be and a big dark blob next to it. It went something like this:

Here’s your brain. Here’s the tumor before surgery. Here’s the tumor after surgery. There’s no change. All this adjacent tissue is removed, but the tumor was not biopsied that I can see. I don’t know what tissue he sent to pathology, but it was not of this tumor. I want to schedule you for a biopsy.

That was 1998. I had just gotten engaged and life was good. I got a second opinion in New York with a terrific specialist who does only brains. Dr. Brains ‘R Us said

Is it a tumor? Yes, probably a very low grade.
Can I take it out? Yes, modern equipment can decrease damage.
How would it affect you? More paralysis, probably most of your right side.
Would I have this done? No. Not now. Go home. If your symptoms change, your doctor at University of Maryland can evaluate you and I’d be glad to see you again if you want me too.

So I went home and dealt with it for 9 years. 9 years. In the last year or so I’ve let it drop that this tumor is still in my head, was untouched and I had a wrong site surgery. Yeah, yeah, yeah, I could be a rich woman. But he’s dead. And my brain is gone. Every year I have an MRI and every year my neurosurgeon tells me it hasn’t grown. It has not changed at all in 16 years or maybe longer, but every year he wants to open my head and expose me to more grief. Every year I think of the vibrant symptomless body I had before some crackpot scooped out a quarter of my healthy brains and every year I say no.

Until this year.

In January it was bigger. He gave me the names of a surgeon at Hopkins and an Oncologist so I could get more opinions. I ignored all of his advice but my symptoms were increasing. Finally in August I went to see Dr Olivi, Director of Neurosurgical Oncology at The Johns Hopkins Hospital. He said I have to forget about the previous surgery and treat it as if I just found out I have a brain tumor.

I’m having the surgery.

On September 26 I’m having a Craniotomy and Brain Biopsy at Hopkins. It seems so strange, but I’m not as scared as I should be. I’ve been living with this for so long that it’s like going in to have my Gallbladder out again. I’ve had all these weird signs from my Mother who died 10 months ago. Signs have been pointing that everything’s going to be okay. I believe she’s been pushing me to finally get the damn biopsy done so I can put my mind at ease after all these years.

So wish me well, say a prayer, think of me in the coming weeks while my adoring husband and I figure this thing out. We’ll be okay as long as we do this together.