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.
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 GreatBigSea, 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.
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 :-)
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 . . .
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
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.
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.
I started knitting for charity because of members of my family lost in 2005/6. Aunt Betty, Aunt Mary, Uncle Walt and Pam. ~~~But especially my Godson John.~~~
Mom passed in 2006 ~ she kicks me in the butt sometimes.
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.
