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.

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.

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.