My new baby

Look what finally arrived 9 months after I put down my deposit!

I got a litttle nervous on my way to the scooter store, thinking "what if I've lost the ability to ride on 2 wheels after all this brain trauma?"

Fortunately, this was not the case, and after two trips around the block, I was shifting pretty competently. It was a gorgeous day to ride and I was grateful to be able to ride home in light mid-weekday traffic. She rides so smoothly and so quietly. It's a completely different ride from my little two-stroke, which I'm giving to a friend of mine who lives in North Beach.

This is the first thing that's made me feel "normal" since before my first brain surgery. I'm looking forward to getting a lot of riding in this weekend.

Yippee!

The latest CT scan results

I haven't posted a picture of myself in awhile, so here I am, bald and thin from my many procedures. You can see a nimbus of white fuzz growing in patches on my scalp. I'm skeptical that it will grow in to resemble my former hair, so I will probably end up having to shave my head.

The scan results were good. The only change since the last scan in November is a small spot on my lungs that Dr. Liu was fairly certain is phlegm due to my recent cold and nothing to worry about. My right buttock is still noticeably smaller than my left. He is still mystified by that, but not alarmed. Those of you familiar with Voltaire's 'Candide' might be reminded of Cunegonde's old lady attendant who only had one buttock (the other one had been eaten by Mongolians), so like her, i will soldier on in my lopsided form. "On to Cadiz!. Painful ride it will be for me with one buttock." The next body scan will be in June.

My blood work showed the low phosphorous level I've had since before my cancer diagnosis, and that my t-cells are taking a long time to recover from being assaulted by Decadron. The count was a little higher than my last blood test had, so things are moving in the right direction, at least.

Apart from waking up with a head full of snot every day and having this slight cough, I feel pretty good. My left hand has regained almost all of its former strength and dexterity, which cheers me considerably. Coincidentally, I've been feeling ready to drive my scooter again, and I got a call today that my brand new Stella 4-speed manual transmission scooter is on its way to SF from Chicago. Good timing. I need my left hand since that is where the clutch and shifter are. I'm very excited about riding two wheels again, as this will bring a new level of independence (and free me from having to ride Muni.)

Cyberknife treatments are all done

I am finally over what turned out to be a 3-week-long cold, that was the worst one I can remember having. I have about 50% of the hearing back in my left ear, which may be as good as I have had for the last 10 years or so, since having to fly with a sinus/ear infection.

And yesterday, despite delays and interruptions and an increase in the number of surgeries from 3 to 5, I finally had my last intimate encounter with Cyberknife.

Although I did have to go to bed at 8 last night, I feel quite well and energetic today. Decadron didn't manage to raise my blood sugar this time.

Here's the plan now (assuming there are no "events" that intervene):

I'm having a CT scan at the end of the month and consulting with Dr. Liu on 3/1 (this is to look for recurrence in the body only).

In 3 months, I'll have an MRI of my head and consult with Dr. Gillis.

That's the pattern until the scans find something or the something makes itself evident. A scan of each type every 3 months with a follow- up visit to the doctor. I'm not on any special cancer meds at this point.

Hoping that by being a good patient, I've earned a respite from horror and tedium. I don't plan to blog very often unless there's a lot of news. I'll do infrequent updates to let readers know I'm ok.

Eardrum punctures and Cyberknife adventures

I had to delay my first Cyberknife treatment, which was scheduled for yesterday, because my never-ending cold has now settled into my chest and I have a cough that rivals the sound of my motor scooter's engine. Besides just feeling lousy, I was worried that my coughing would shake my head too much for the Cyberknife. It tolerates small movements, but shuts down if the movements are too severe.

So instead, I called my primary care doctor, dear Dr. Chan, who answered the phone with the same phlegm-laden voice I have right now. Yes, he has this cold too. God bless him, he sent an order to the pharmacy for codeine cough syrup, and last night I had my first good night's sleep since this cold settled on me.

This morning I went back to Dr. Gupta to get the tube put in my eardrum. There was a lot of fluid backed up in there. It's nice to be able to hear out of my left ear again. My neighbors will no doubt be glad not to hear my TV too.

This afternoon, my adventures continued when I had my first Cyberknife treatment. The cough syrup did its job, with a little help from an adivan, and I actually napped through most of the hour-long session. The most impressive thing about today was how exuberantly I was greeted and hugged by all of the nurse techs who have worked on my case in the three different sets of treatment I've had there, when we all happened to converge in the main hallway at the same moment. It really made me feel good to have such a warm reception, despite being there for such an icky reason.

I met with Dr. Gillis and she explained that as she and Dr. Tse were designing my treatment, they saw an opportunity to further reduce my chance of a recurrence by zapping a deeper area under the original tumor site, along with the tumor remnant they saw on the MRI. This means a total of five treatments, which will end on Wednesday.

And then, I hope I can resume a mostly appointment-free life for awhile. However, this hair ain't growin' back, so I need to develop some sort of Phillip Johnson look for myself.

The latest

My ear:

I had a hearing test on Tuesday, which showed two things:
- I have significant hearing loss in my left ear....but
- there is no neural or brain damage related to this. It's just a lot of fluid backed up behind my eardrum. Dr. Gillis thinks the radiation may have played a part in it by drying out the wax in my ears, thus blocking the fluid's egress. Next Thursday Dr. Gupta will pierce the eardrum and install a tiny drainage tube. I should get most of my pre-brain tumor hearing back. Not having a hellaceous cold should help too

Cyberknife:

This morning, Kevin and I drove down to the Radiation Treatment Center where Dr. Gillis explained the procedure and its risks and had me sign the consent forms. Then we met Dr. Tse, who is a neurosurgeon in Redwood City and works with Dr. Gillis frequently on Cyberknife procedures. Dr. Tse explained the mechanics of how the Cyberknife works and that it's particularly good at zapping masses too deep in the brain to reach with a scalpel.

A new mask was created for my treatments,(to snap my head down to the board.) and a CT scan was taken. Tse and Gillis will use that scan together with the MRI that's being taken in Redwood City tomorrow to determine their "beam design". The actual treatments commence next Wednesday and end on Friday, 3 treatments in all, each lasting about an hour.

Good news on the Decadron front. I only have to take it on the three treatment days. This is very good news,since I'm only just now losing my toddler tummy and looking like my old self again.

Crap! Crap! Crap!

On Tuesday I went down to Redwood City to have my post-surgical MRI and follow-up exam with the neurosurgeon, Dr. Lavery.

Unfortunately, the scan was not the nice clear image I had hoped for. A small mass is still visible where the last tumor was removed.

So now I'm about to have a radiation procedure called "Cyberknife"' wherein a robotic arm will be programmed to zap that one little spot with multiple beams of radiation. This requires me to go back to Redwood city for another MRI and then to south San Francisco to consult with Dr. Gills next week, with the treatments beginning the following week. To me, one of the worst things about this is I'll have to go back on that awful steroid, Decadron.

I'm trying to be a good sport,, but this latest news really has me down. It doesn't help that I've come down with a cold.

Santa Baby

More progress: I can tie shoelaces and wear button-fly jeans again. I am typing this with two hands, though somewhat clumsily. I go out now without my cane. My blood sugar continues to be low.

I went to physical therapy on Monday and Sara taught me some exercises to strengthen my fingers, using rubber bands and playdough.

I really don't have any right to ask Santa for anything more this year, but I have a few requests, as you might imagine, which I'll keep between him and me.

I'm looking forward to getting the staples removed next Monday, as they are starting to hurt when I lie down and it wakes me up several times during the night.

I've disconnected all the old computer equipment and my desk looks much nicer. My new Apple wireless base station is also a 1-terrabyte backup drive that automatically backs up everything on my Macbook every hour. I hope to get more decluttering done this week, if my energy level allows.