Avastin Works

After falling last night, literally falling down in the hallway, in the battle of you can’t brush my teeth, I proceeded to cough through the night. I always almost had to go to my recliner in the living room ….

I read the results of yesterday’s brain scan and they appeared mixed: less enhancement around ground zero tumor, more around satellite dark horse tumor in my left-now-not-right hemisphere.  

my son calls for a Kleenex
in night rain
magnolia blossom

CAM

The good news from today’s follow-up with the Tuncer is he has no doubt the Avastin is responsible for the reduction and the reduction is significant. He congratulated me and shook my hand and said it was well beyond his wildest expectations. When we asked about the new spot in the left hemisphere, he disagreed with the radiologist that it had, in fact, grown.

Bad News

Yesterday’s scan showed new growth around the primary site of my tumor/biopsy incision. Additionally a new spot has sprung up in the left hemisphere (mine has always been a right-sided tumor with left side body effects). Adding insult to injury to injury, Tuncer ordered an ultrasound of my legs because of the swelling in my left foot and discovered a blood clot—in my right calf!

It’s still drizzling out there and all day yesterday I kept thinking, “what a gloomy day,” though March doesn’t feel like the right month for seriously bad news … so, I’m kind of just watching things and reserving judgment this morning. I couldn’t make heads or tails of the test results, the technobabble of radiology … though I’d viewed them before yesterday’s appointment. They definitely didn’t sound nice.

One reason I’m not freaking out right now is I may be too tired … after nearly nine years of scares. Was telling Uncle Steve, the element of psychological torture has always been there, a greater suffering than the purely physical pain of joint pain from steroids or electrical shocks from Optune therapy. Taken altogether, with the pressure to undertake every possible treatment option, you get tired, I think. Life becomes a struggle for survival, for more life. More work. You have to work to work.

Yesterday, for the first time since 2014, the question of resection arose, and Tuncer spoke on the phone with my original neurosurgeon, Dr. Milligan. He said surgery might leave me totally paralyzed on my left side. And Tuncer prescribed Avastin, biweekly infusions, instead.

Longest Lasting Seizure

February 2 was two seizures and ER.

4:15PM, yesterday, Feb, 20: seizure beginning in left arm and hand. Touching shoulder, the back of my neck, “walking,” as neurologist Ousal said. In the car, the jerk of it hitting my left breast by the time we turned onto 7 Highway 20 minutes later.

Still going on an hour later. Left side of mouth, face.

5:37PM: Trying to stand, numb in left side, arm and breast. Heavy with numbness. Tingling.

5:50PM: Less sensation left of mouth, neck. 

6:05PM: Ongoing arm with tiredness.

6:17PM: The tingle is an echo of my right hand holding my left. The touch has an echo.

8:05PM: Hand still tingly.

About My Anxiety

I was glad I posted about having a seizure on Jan. 12 because the timeline I established with that has proven useful. The immediate reaction was, of course, to increase the dosage of my antiseizure drug Keppra from 500mg twice a day to 750mg twice daily. The main side effect there with slowing down the neurotransmitters is fatigue. And that’s entered in to any discussion of my overall energy level. Dropping.

At my last appointment with Dr. Tuncer, he asked about my anxiety. When I said I’m not really anxious he joked that may be because of the Keppra. At least, I think he was joking … but the implication that I really should be worried has haunted me. A lot of seizure adjacent experiences have followed the Jan. 12 incident. For example, last Monday I was having a persistent muscle spasm in my left side that was isolated to my left side and just sort of had to wait it out with Grandma there to handle the childcare bit where I have this ten-month-old daughter home with me now that Lili’s gone back to work and Thing One and Thing Two to school. (Let’s just say the singlehanded diaper changes are a wrestling match with one hand tied behind your back).

Alas, today, after the morning blood draw (chemo is hard on white blood cells, as it turns out), I “seized” again. Another unmistakable one. Numbness in my left hand was the first sign. Then that bounced around my left arm, leg, foot, side of my face, neck, shoulder, and all. I swear I even felt a momentary tingle of loss of blood/sensation to the place I shan’t outright say. So, Lili lost her work day. Omi, school. Me, I lost almost all productivity in my haikuing. Forced rest. Listening to my body. Stupid videos on my phone. Sucking the last drops of Netflix before I’m kicked off for password sharing (hey, I pay).

Oh, and I’m back on the insidious steroids for a week: 4mg in the morning. That usually kills my sleep nights.

Another Seizure

Just had my first seizure in eight years! Was sitting at breakfast when an electric pulse commenced in my left arm and spread down to my left leg. This continued for several seconds and was accompanied by a growing numbness in those areas. About 30 minutes later, I can still feel diminished sensation in my arm and some intermittent aches there also.