About nothing

Everyone seems so impressed that I could get up and walk around and do things like healthy person. "I am a healthy person", I would say. I feel fine.

A perfectly good Saturday being spent bored out of my mind waiting for this MRI that was supposed to happen. Every once in a while a doctor or physician's assistant or a physical therapist of some sort would come in and do that test where I squeeze their fingers and touch my nose and I would of course knock that test out of the ballpark. I exhausted all my social media and caught up on all my correspondence and the reading I had with me and explored the hospital TV channels up-and-down over and over for Olympics coverage that might engage me.

Finally a neurologist named Dr. Santos came in and gave me his version of the battery of easily passed brain damage tests and talked about my upcoming MRI scan (now scheduled for 6 PM) and what else these symptoms could mean. He said it was unusual for a stroke to strike in the same way twice so that my description of having experienced the phenomenon in identical terms played against the idea that it was a stroke. He inquired about the experience of how the experience came on.  I described it is kind of like the John Travolta film called "Phenomenon" where it came on like a flash of light, all at once. He spoke of the experience being somewhat like a migraine and asked if I had any experience with migraine, which I hadn't. Then he brought up an idea that had crossed my mind but since no one else had mentioned it had decided to just not think about it being a possibility. It could be a small mass in my brain.

From that moment on I was quite sure that that was indeed the case. The cancer, I imagined, had metastasized in my brain. I had seen it happen to my friend Bob Russell and now it was happening to me. From here on, the upcoming MRI became a subject of dread for me. Of course. This explained it all. This was the beginning of the end.

At 5:45 PM I was finally fetched by the transpo guy and wheeled down to the MRI room. I smartly chose not to have music piped in this time and they gave me both ear plugs and earphones to insulate from the pounding noise that happens inside an MRI. The guy trie to find a nurse who could access my port for me since they were going to inject contrast but he could not find one to pick up a phone so so he ended up poking new hole in my arm to give me the contrast dye. It's weird that this non-nurse technician is allowed to poke a hole directly into my vein but he can't put a syringe on the apparatus that's already plugged into me.

I kept myself calm by imagining all these noises, those percussive jackhammer booms and ratatat sounds were a form of music. They give you sort of a periscope so that it looks like you're looking straight forward but you're really looking over your body into a window where you can see the technician sitting at a control panel. It was finally over. My whole day, the last 20 hours, was spent waiting for this test.

Mary was waiting for me back in the room. She snuggled with me on the hospital bed, watching Olympics while we waited for the results of the wet read, dreading the worst news.

The news was finally delivered by an African nurse named Michael who was clearly a little bit English-challenged but his news was good; the results were negative. Nothing. Michael went on to read the follow up instructions in broken English. Go home. Call Dr. Santos' office on Monday and schedule an EEG as an outpatient and a follow up appointment in three weeks. Continue life as normal.

Everyone kept saying that it was such a good thing that I came in to the ER when I did but the grand result is inconclusive.  I may or may not have had a TIA. I spent  29 hours of my life feeling perfectly normal in a hospital room, mostly on a bed with commercial TV as a companion. A good thing I came in? Really?

Gather round for a tale of much ado

I'm sitting here in a hospital bed, not much to do and remembering back on how I got here. Warning: when I am bored I tend to write a lot.

It started when I was doing some video editing. I was playing a clip when suddenly in my left ear, the sounds I was listening to became metallic and ringing. I remember thinking "cool" for just a second and then changing my mind and thinking "this is not right."  I quickly noticed that it was not just my ear and that my whole left side from my neck down my toes was beginning to feel numb and like pins and needles. With the aural effect it was quite otherworldly. I looked at my watch and it was 12:15. I thought, "this is only on the left side I wonder if this is related to stroke. Am I having a stroke?" I walked over to my favorite overstuffed chair to sit down and see if this would pass. I assumed this was some sort of weird of effect from my chemotherapy just kicking in at this late moment. I started looking through my cell phone directory to see if I could find Dr. Scott's phone number in my cell phone. But for some strange reason my oncologist is not in there nor is his office or anybody else I can think of that was affiliated with the Lacks Cancer Center.

Just then my cell phone rang and it was a friend whom I had not spoken to in a long time and who had a serious professional issue to discuss. I thought about saying, "this is not a good time. I'm experiencing a weird medical thing right now." but I thought that would be a little bit TMI strange and so I decided to just listen instead. By the end of the conversation I'd pretty much felt back to normal. So, being a guy, I decided I would just press on with my day as if nothing had happened.

At 1:45 I went into work, being 15 minutes late for my meeting. Class started at 3:30 PM and seemed to be going well and I had nothing unusual to report until 4:15 when once again that ringing in my ear told me I was going to have another one of these spells. Again, my first impression was, "wow this is kind of trippy" and then my second impression was, "I better sit down and figure out what to do because I have a class full of kids who needed me to help them with the scene that we were shooting."

I went out in the hallway and sat down on one of the comfortable couches and quickly decided that I better call the doctor. I could remember the first three digits, 685, but I couldn't remember the last four but I thought it ended in 00. So I tried several combinations getting various other doctor's offices until I hit the Lacks cancer center operator. I relayed my symptoms and my cell phone number and was told they would call me back in a few minutes to tell me what to do. I went back in the class and helped them a little bit more, still feeling kind of otherworldly. My phone rang a couple minutes later and I ducked back out into the hall.

"Get thee to an emergency room right away".

Being only a couple of blocks away and being a guy, it seemed right at the time to drive myself there. After all, I only need my left foot for the clutch and who needs a lot of clutch. If I could walk I could surely pushing the pedal.

As it turns out, when you have stroke symptoms people take that very seriously in an emergency room and they got me in quicker than I've ever been taken into emergency room before. I was being wheeled in for a CT scan only moments after they took all my vital information. I attempted a couple of calls to Mary at work and on her cell phone and managed to squeeze one into Abby just before I got to  Radiation. The dude running the CAT scan machine and I are very familiar to each other as he's the one who originally discovered that I was allergic contrast dye so we are kind of friends that sort of level.

Abby was only a few blocks away so shortly after they wheeled me into a regular room, Abby showed up with a smile and the news that she had gotten into a little fender bender as someone had rear ended her at a stoplight earlier in the day. Her car was still drivable but would need some body work.

I talkative neurologist entered the room and proclaimed the CT scan to look good and they were going to run me through a whole battery of tests. He described all kinds of things it could be, most fitting in the description of TIA or a mini form of stroke. TIAs in themselves do no damage but they're often the forerunner of a real stroke which does actually do some damage to the brain. The fact that I've had two of them made me a high-risk and I was told that I would probably be spending the night for observation. They accessed my port so they could draw some blood, which I appreciated having one less arm poke.

Abby stayed with me until Mary got there and a tall funny nurse explained that she was soon to be replaced by a shorter, less funny nurse.

It seemed like forever before they finally wheeled me up into a room in the main part of the hospital. By this time I was starving and the kitchen in the hospital was closed so Mary ran out for some wonderful Thai take-out food for us to share. Peanut curry rice noodles with green beans and carrots.

About seven or eight times throughout the evening I received multiple variations of a neurology test  where they make me pinch their fingers and raise my legs and smile and close my eyes and all kinds of things to prove that I wasn't having a stroke or experiencing aftereffects at that very moment. I passed all of them with flying colors; even the trick questions.

In my hospital room I was introduced to Dr. Victory, a very wonderful internal medicine doctor who talked with me for a long time, explained lots of things and demonstrated her expertise and sensitivity in lots of subjects. She introduced the two big tests I still had to do for the complete work up; an MRI of the brain and some ultrasound pictures of my carotid arteries. I was scheduled for 10 pm.

I was totally enjoying conversing with my PCA (who smelled wonderful) and my cool RN with a background in Oncology (whose constant interruptions from others demonstrated that she was clearly a boss of some kind) when it was time to get wheeled down for the MRI. I had declined sedatives for the MRI and was kind of regretting that, thinking a nice buzz would feel pretty good. 

Down in radiology Kylieigh, the sweet-smelling PCA, pushed me past a doorway and I heard a woman say, "Mr. Peterson?". It was Amanda, the kooky ultrasound technician. She short-stopped me insisting that it was ultrasound first, MRI second. Kyleigh gave me up and my neck was soon slathered with ultrasound goo. For 45 minutes, Amanda ran her thingee up and down my neck, recording pictures and audio snapshots of gushing blood that I could hear amplified in the room. She would occasionally warn me not to fall asleep.  

She was finally finished at about 11pm and wheeled me into a hallway outside of the MRI rooms. But it was a ghost town. There was not a soul to be found.  It looked closed up for the night so she wheeled me back to my regular hospital room. MRI would have to wait until tomorrow.

I had another helping of peanut curry and settled into bed. All my technology had dead batteries so I found a crappy movie on TV (Indiana Jones and the I'll-advised Association with Shia Laboef) and let it put me to sleep. They warned me they would be waking me every two hours to test me but thankfully they were slacking. I think I was waked up once.

So it is almost noon on Saturday and no MRI or news of MRI. I am completely disappointing and healthy to everyone who tests me. I've got new RNs and PCAs and Mary swung by to drop off my bevy of power supplies (bless her) so I am plugged in again to my social media and blog.  

And that is the sum of my story up to date. I'm perfectly healthy and this seems like too much fuss.

Transient ischemic Attack

http://en.wikipedia.org/wiki/Transient_ischemic_attack

Sounds cool. But kinda boring. I'm hear in the hospital overnight for observation. I guess I want to see if it'll happen again while they're watching. I only have 2% power on my iPad so I'm going to have to update this later and you'll have to remain in suspense until I do.

Familiar yet strange

My friend Stephen asked me the day before whether this was a bit like the dread of going back to school after summer vacation.  I had to say no, that it it is not quite like that; the big difference being that there is no ominous threat ready to kill you if you stay longer on summer vacation.  On the contrary, I would have preferred starting chemo a week sooner so I could progress more quickly to the part where it is behind me.  But I get the reference. I will miss the pleasures of energy, taste and... whatever you call the opposite of feeling nauseous.

Back in the infusion lounge at 8:30am, it felt somewhat nostalgic to see all those faces again.  I grabbed my favorite seat by the window and greeted each of the nurses and other staff with the bittersweet, "It's good to see you again and I'm sorry to see you here again" paradox.

It was a slow start as my port was all gummed up.  It took three saline flushes before the back flow was established for the initial blood screening.  Abby showed up in time to witness this, much to her regret, but soon the hydration was begun.  We snacked on nuts and met the neighbors while Nurse Linda got the clearance to hang the heavy stuff on the pole.

The first round is always the anti nausea drugs and that libation is always puts you in the mood.  The second round was Carboplatin and I found that it complimented tuna fish sandwich quite nicely.  Things got a little weird on the third round when Irinotecan was introduced.

I started noting some visual glitches in my peripheral vision; slight enough that I did not give it much thought.  But when I made a trip to the bathroom, the lines on the margins of the square tiles were undulating around in a trippy manner.  Kinda cool but definitely not normal.  I rang up Linda on the call button and she cut off the Irinotecan flow and replaced it with saline.  At the same time, I noticed that it was only in the left eye.  As the effect diminished back to normal, it occurred to me that it could be related to my recent bout of iritis.  My last dose of highly concentrated steroid eyedrops was just yesterday and only in my left eye.  This seemed to be a reasonable explanation and Linda put the drug back on the drip but at a slower rate and all seemed to be fine.

There were surprise visits from Amy the nutritionist and Alina the counselor and even my grumpy former neighbor, Jim Scott.  Actually Mr. Scott did not see me this time and I like it that way.

Now I'm home and feeling kind of crappy... but not so bad.  I cooked a nice birthday dinner for Marlee (mushroom risotto) and Abby joined us.  Early to bed tonight.

Update to "Bumpy Road"

Just got word that chemo has been approved by the insurance company but first infusion has been bumped to next Monday, February 10 at 8:30 am with one of my terrific former nurses, Linda.  Got a whole 'nother week of reckless hedonism before I get the drip.

Back on that bumpy road

We should get Dr. Scott to play poker with us.  He's an easy read.  Of course, I am too so leave me out of the game and we can split the winnings later.  So I pretty much knew it was going to be bad news from the moment he walked in.  He tends to lead with his good news so his silent poking and prodding and questions about changes in bowel habits lead up to the expected, "So my news is not so good".  He handed me the report but went right to the spoiler before I had a chance to read a sentence.

There are a whole bunch of new little spots in the liver.  They are all "sub-centimeter" but they are consistent with metastatic cancer.  The visuals were backed up by a huge spike in the tumor marker blood test. These little suckers are growing and they've found a comfortable medium in my liver; fortunately no where else. I still have no physical symptoms of pain or digestive problems.

We went over and looked at the scan together and started moving through the CT scan layers, counting them and got up to about 6 or seven and that was enough for me.

Dr. Scott had a couple of ideas.  He felt that chemotherapy had the most likely chance of success... a weed killer spray approach as opposed to a weed pulling approach.  This made sense to me. There's no telling how many "seeds" are germinating.  Chemo worked in the past and it can work again.  A guy that he considers a top expert in the field of esophageal cancer really likes a particular chemical but its side effects are pretty uncomfortable; a very nasty neuropathy that involves temperature super sensitivity.  No hot drinks or cold drinks. No ice cream. No hot showers. No going out on cold or hot days. No thanks. Dr. Scott was really recommending a different cocktail that would allow me to continue working.  Some of the usual side effects like hair loss, diminished taste, nausea and diarrhea, lowered white blood cell count, but nothing as severe as what flattened me 2 summers ago.  And if it doesn't work, we can still try the other chemo.  So we are starting next week.  I'll know the specifics on Monday and infusions at the infusion center will start on Tuesday.

So these are the drugs I will be introducing to my system:

• Irinotecan - Irinotecan is a chemotherapy drug made from a type of plant alkaloid known as a topoisomerase I inhibitor. It is thought to work by blocking the action of an enzyme in cells called topoisomerase I. Cells need this enzyme to keep their DNA in the proper shape when they are dividing into 2 cells. Blocking this enzyme leads to breaks in the DNA, which leads to cell death. Because cancer cells divide faster than normal cells, they are more likely than normal cells to be affected by irinotecan.
• Carboplatin - Carboplatin is a platinum chemotherapy drug that acts like an alkylating agent. It stops the growth of cancer cells, causing the cells to die.

I think this will be weekly for 4 weeks but I'll know for sure on Monday. 

Ahhh, it's a bummer and I'm going to miss the energy I have right now and especially miss the taste of food. But it is only for a short time and then it will be spring.  I've done this before and I can do it again.  The last time, a few months of sickness was followed by a year and a half of awesome life.  Going for a repeat of that!