Tuesday, April 8, 2014

Ice cream and hot shower binge

Chemo was cancelled today because Dr. Scott wants to upgrade the regimen. "I'm not doing enough for you." he said.

The report from last Friday's CT scan confirmed what I suspected; the liver lesions are still growing and multiplying in the right lobe of the liver.  I had a gut feeling. Literally.

Inspired by a recent talk from Memorial Sloan Kettering Esophageal Cancer guru, Dr. David Ilson, Dr. Scott wants to try me on a combination of Oxaliplatin and Fluorouracil (5-FU). The former is similar to what I am used to but the latter has some new side effects and a new delivery system.  The side effects are mainly temperature sensitivity.  No hot or cold foods or drinks, no hot showers or reaching into the freezer.  It is delivered over 46 hours so it will involve an electric pump hooked to my port that I will take home with me for a couple of nights.  These sound very unpleasant but one of the problems I had with the last regimen was that I was not feeling it enough.  I did not have the sense that it was killing cancer, and that proved to be the case.

So I'm off to get some premium ice cream and hot fudge.  I've got a week to enjoy these pleasures.

Monday, March 31, 2014

Plodding along in the middle

I'm trying to get used to this new feeling.  Just a little sick all the time.  Not so sick as to complain or require special treatment, but a general, slight lowering of well-being.  I'm a little grumpier and a little harder to live with but otherwise living a normal life.  Part of that normal is chemo every Tuesday. Providing it is working I'll continue on this path through the summer.

My first glimpse into the effectiveness of this treatment begins with a scan this Friday and a meeting with Dr, Scott next Tuesday to review results.  I think the best to hope for is that the lesions identified in the last scan will not have grown much.  Shrinking them will take more time.

I like to think of it as chopping off both the highs and the lows.  Gone is the thrill of good health and optimism I enjoyed last year but also gone is the fast-growing specter of killing disease.  The cure lies somewhere in the middle of those two.

Friday, March 7, 2014

Science project

One last test, The EEG, as illustrated above, was the Monday afternoon test of the day.  I'm not sure why I had it except that it seemed to be a last confirmation that I did not have any kind of stroke.  The test would have been pretty easy except that I had a terrible headache heading into the test.  I'd actually had bad headaches all day on Sunday too that could either confirm that I am now getting migraines on top of everything, or it could mean that the spinal tap had a small leak and fluid imbalance was causing headaches; a known side effect.  But once I lied down, the headache faded a bit and I was able to follow the simple directions: open and close my eyes a few times while lights were flashing and then close my eyes and spend 1 hour trying to go to sleep.

It's pretty cool that the technician sitting in the corner of the room could tell if my eyes were open or closed by looking at electric signals showing brain activity on a monitor.  She was also able to tell when I fell to sleep.  Being Fat Tuesday, I had read a review earlier of where to get the best local paczski and as a result, dreamed of pastry and woke up with too much saliva.  I kept swallowing and swallowing and it was clear I could not go back to sleep.

I stopped and picked up a raspberry paczki at a Dutch bakery on the way home.  It was delicious but my headache returned and I spent the rest of my day in bed.

Tuesday morning was my followup appointment with Dr. Scott.  He was very late in his rounds but when we finally connected, he expressed his confidence that the chemo could continue immediately and that the tests seem to show that there was no evidence of TIA or stroke.  Chalk it up to a weird couple of isolated migraines.  He wrote me a prescription for headache medicine to pick up later and sent me back to the infusion lounge for the full treatment.

Linda got me hooked up promptly and the chair next to me was soon occupied by an older woman accompanied by her sister.  It was their first time.  She was there for ALS treatment, not chemo.  We shared stories and soon figured out that her granddaughters went to City High and in fact were friends of Abby and Marlee. Small world.  Aunt Marge could see that I was suffering from a terrible headache and offered to "rub my head".  I admitted that a good head rub would probably help but of course I could not ask for such a thing from a stranger.
"Nonsense", she said. "My husband gets migraines and I know just what to do."

She went off and found a hot towel to prop under my neck, squirted some lotion into her hands and proceeded to massage my scalp around the eyes for about half an hour.  The headache slipped away. 

No other side effects cropped up from chemo but the headache did return after dinner so it was back to bed.

Wednesday morning there was no headache.  I filled the prescription but clearly the headache phase had passed.  Mary and I believe it was probably the spinal tap.  Now I'm back to killing cancer with chemo and the very limited, manageable, low-grade nausea that comes with it.  One more treatment next Tuesday and then two weeks off.  Dr. Scott will meet with me again on April 1.



Saturday, March 1, 2014

A week of testing

As I write this, I just received a "lumbar puncture", more commonly known as a "spinal tap".  Dr. Scott wants to know the secrets that may reside in my spinal fluids and I am a bit curious myself.

My recent hospital stay included the instructions to call Dr. Santos' office and schedule an EEG.  I decided to wait until after my next chemo treatment on Monday which would be followed by an early Tuesday morning appointment with Dr. Scott.  I thought he might be able to explain why I needed this.

I reported to the chemo lounge at 8:00 am on Monday and Linda hooked up to my port while I told her the events of the previous weekend.  She took some blood samples and decided to call Dr. Scott at home to see if the Friday TIA incident might have any bearing on chemo treatments.  He instructed her to put off chemo one day until he had studied the possible relationship between the drugs and the effect.  More than likely, he would suspend one of the chemicals that had some minor associations with constraining arteries and possible stroke risk.

So on Tuesday morning, Mary came with me to my appointment and Dr. Scott examined me and we listened to his various reasonings.  The bottom line was that he wanted more tests so he could determine whether the chemo was related to what they were calling a "TIA".  SO he cancelled Tuesday's chemo treatment completely, put me on the baby aspirin regimen, scheduled a EKG for Wednesday morning, and urged me to schedule the EEG with Dr. Santos ASAP.

I called Santos' secretary a bit later and left her a message.  Meanwhile, Scott's secretary called to tell me she had scheduled the lumbar puncture for Friday.  Santos' secretary called back and said she got me scheduled for an EEG next week due to a cancellation but unfortunately, Dr. Santos would be away at a conference and would not be able to read it until the following week.  In the evening, I got a call at home from Dr. Scott, himself, apologizing for not telling me about the spinal tap in person.  I told him of the drawn out EEG scenario and he seemed quite miffed as he thought he had communicated urgency to Dr. Santos. "Did you tell him that I have suspended chemotherapy for this?"  He told me he would call and see if he could move up that appointment.

Wednesday at 3:00pm I was at work when I noticed a voice message from Dr. Santos' office saying they would squeeze me in this afternoon.  I quickly called back and they said to come right now.  I arranged my sub and hustled over to his office which was only about 3 blocks away.  Turns out, this was not the EEG but rather an eye examination.  Dr. Santos is a Neuro-Opthamologist. His examine was looking into my eyes for any irregularities, possibly damage from iritis or other maladies that reveal themselves on the retina. I learned nothing new from this visit except that Dr. Santos does not think the episodes on Friday were related to stroke or TIA. He thinks they are more consistent with migraine but without the pain.  I guess there must be a first time for everything. He would recommend getting back on chemo based on what he observed; or didn't observe.

Thursday morning was my scheduled esophageal stretch endoscopy with Dr. Lown (who discovered my esophageal cancer two years ago.)  My brother-in-law Bruce did the transportation and waiting duties. I knew the routine. It wasn't until later Thursday night that I realized the "amnesia" aspects of the versed had been in effect and I had no idea the results of the procedure.  Was there paperwork? A call to Bruce cleared that up. The paperwork was in my coat pocket and the procedure had gone fine... All looked good on there.

So here it is on Friday. I took the day off from work for this spinal tap. They got me into a room quickly and I had a really great nurse (Sherri). They were running a half hour behind in radiology because some guy took a half a day off.  Brad, the Physicians Assistant and I recognized each other immediately from past procedures in his department; the grooviest department in the hospital.  A couple of people had asked if I had had this procedure before and I had replied that I did not think so. But in that room as Brad described it, it came back to me. I could even remember what it felt like. Unpleasant. A special, live, directional X-Ray showed Brad exactly where to insert the needle to draw 4 vials of fluid. The skin poke was not so bad but the final penetration into the canal hurt quite a bit and Brad added some extra lidocaine.  The fluid will help Dr. Scott rule out the elusive lymphoblastic lymphoma as the cause of my little numbing spell.

After it was done, they wheeled me into this area where you wait for transport. I had to lie flat on my back and had nothing to read so all I could do was listen to the woman in the next stall over who was snore-moaning: a loud rumble snore followed by a painful moan. I'm glad she was asleep so she did not have to experience whatever pain it was causing the moan. But being six feet away separated by a curtain, I experienced it big time. I could observe 3 transport guys sitting there, joking talking about stuff, making phone calls and generally looking like they had nothing to do.  After about 10 to 15 minutes I finally broke and pressed the red panic button, turning on my light. One of the guys turned around and acknowledged me.  I asked him how long I needed to wait here?  He said, "Oh, is your LP procedure done?"
"Yes it is", I concurred.
So he wheeled me back to the room.

A spinal tap requires that you lie still for two hours while your body plugs up the hole sufficiently.  I got to order late lunch and catch up on this blog post.  Abby is coming to pick me up and take me home.

Five days in a row of doctors and tests following last weekends hospitalization and Monday will be another test; an EEG.  I hope they figure out what is going on so I can go back to killing cancer.



Sunday, February 23, 2014

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?


Saturday, February 22, 2014

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.