Monday, October 27, 2008

Sunday, October 26, 2008

New Brace


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



*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.

Friday, September 26, 2008

What a Year.

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.


Remember all my references to The Wizard of Oz?

There's no place like Home.

Tuesday, September 9, 2008

Walkin' and Singin'

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.

Saturday, August 2, 2008

The Bawdy Balladeers

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 :-)

Sunday, June 29, 2008

Sinuses of Doom

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.

Tuesday, June 24, 2008

I Reveal Myself

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

tinkknitz meme

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.

Sunday, June 15, 2008

Sayonara Steroids

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?

Thursday, June 5, 2008

A Sad Day

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.

Wednesday, May 28, 2008

Vacation. Take II


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?

Monday, May 26, 2008

We went on VACATION in New England

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.

Saturday, April 26, 2008

Not So Good and Good News

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?


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.


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

Thursday, April 17, 2008

Add My Dad

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.

Monday, April 14, 2008


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.


Friday, April 11, 2008

Oral Chemo

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?

Tuesday, March 25, 2008

I Saw Esau Sittin' on a See Saw

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.

Monday, March 10, 2008


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.


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.

Wednesday, March 5, 2008

Good Night Moon

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.

Saturday, February 23, 2008

Happy Friday! (yesterday)

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.

Saturday, February 16, 2008

Baby Steps

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.


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.

Tuesday, January 29, 2008

Phase 3

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?

Monday, January 28, 2008

Uh, I'm not dying

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!

Sunday, January 27, 2008

Ocean City

What happens with the Sisters stays with the Sisters.

Wednesday, January 16, 2008

Bad Blogger - No Cookie!

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.

Tuesday, January 1, 2008

A New Year

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