#330: The Waiting Begins




"What are we doing?"
"We' are waiting for the Doc."

I've said it a hundred times: cancer teaches you patience. I went to the clinic at 1:00 and was there until 3:30. During that time, I went to the wrong registration desk, scooted across the campus to the PET scan trailer, sat for half an hour while my bed turned radioactive, went back across the campus to the first place, registered for my CT scan, sat for about 45 minutes until they realized they had lost my paperwork, got some news from the radiologist, and rode the little sled through the CT scan. And thanks to the things I've learned about life in the last year, I was pretty cool with the whole thing..

Mrs P was really anxious about my scans this morning. I used to think that these morning episodes were because she was a little bit psychic. Now I think it's because her blood sugar is a little bit low in the morning. We talked a little bit, let the dogs out, and started our day.

My appointment was 1:00. For some reason, I had written 2:00 on my calender. Luckily, I got a reminder call yesterday. Still, the confusion left me in a sort of non-committal state. I was showered and ready to go by noon, but then I sat down to spend just a little more time on Facebook. So I hit the clinic door right at 1:00. As I stood in line to check in, my phone rang. It was the PET lab calling to find out where the devil I was. PET time is expensive time. I told her I was in line at the registration desk. She told me I was in the wrong place, and to ask for directions. Now, I had been to the PET scan gizmo once before, but I was busy wondering if I had cancer or not, so I was a little distracted. Today, the nice lady at the front desk gave me directions and I trundled off through the rain to the right place.

Checking in was fast and easy. We all laughed at my mistake. I wasn't embarrassed, and didn't feel obliged to make an excuse or even to fake contrition. I just laughed, and they laughed with me. Then a nice lady named Wendy walked me out to the trailer and we road the lift-gate up to the waiting area. A man who was introduced to me as "Mr. P" without irony or further information injected the radioactive stuff into me. He apologized profusely when he pulled the IV needle out of my arm just as Wendy reminded him that I needed to keep it in for my CT scan later. I shined it on, no problem. Seems like Mr. P has dealt with less patient patients than I.

After half an hour of sitting verrrry still so as not to stimulate what Mr. P called "muscle uptake," Wendy asked if I was ready to go to the bathroom. I told her, no, that it hadn't occurred to me. She seemed puzzled, then said that I really had to go to the bathroom. I figured, "She's the professional, who am I to argue?" Of course, soon as I stood up, the little room started spinning. See, when you get a PET scan, you have to fast for 6 hours. I hadn't eaten since the night before, and it was now almost 2:00. Add low blood sugar to my ongoing issues with blood pressure and it was not a very promising combination. I grabbed onto the door jamb until I could gather myself, then Wendy took my arm and escorted me to the bathroom. I explained that my pressure was a little weird, and she explained that I needed to empty my bladder before the scan. I kept wanting to pull my arm away from her and tell her it was OK, I could walk fine now, but she was kind of a cutie pie and I could tell she was worried about what would happen if this giant old man tipped over on top of her in the parking lot. At least she let me pee alone.

Back at the PET scan trailer, things went pretty much as I remembered. I had to take off my RoadID dog tag and my glasses. I also had to shuck my running pants down around my knees so the metal zipper pull s on the pockets wouldn't show up on the scan. I assumed the position, face up, knees elevated, arms up over my head, and promptly went to sleep for the 20 minutes or so that the scanner rolled me back and forth through a long, white, humming tube. A third tech who never introduced herself helped me to get off the table and waited patiently while my head found its balance, then she sent me on my way back to the front desk to register for my CT scan.

I sat in the waiting room in radiology for a long time. I had arrived with my little note from the registration lady, and filled out the paperwork for the radiology lady. Then I sat down and tried to find a wi-fi connection for my iPad. No luck. I read a Time magazine. I read another Time magazine. I was well into a copy of ESPN the Magazine when I heard a different radiology lady on the phone saying, "No. Not here... Well, I'll call the name and see if anyone answers... Mr. Pennsy?"

"Yeah. Right here."

"Oh, my. How long have you been there?"

"Not sure. Not too long I guess."

"Did you fill out your paperwork?"

I pointed out the clipboard where all my check marks and signatures were still on her desk.

"Oh, my.... Yes. He's here... Well I don't know... Debbie must have forgotten to send it back." She hung up and looked at me nervously, as if I might yell or sue her or slash her tires. "I am so sorry. They'll be right out."

I couldn't resist. "You sure threw old Debbie under the bus in a hurry, didn't you?"

Different radiology lady turned from sorry to sharp. "Sure did. She'd do it to me in a second."

The more time you spend around medical professionals, the more you realize why so many soap operas are written about them.

A lady with a clipboard came out into the lobby, apologizing profusely. You'd have thought these people had lost my car. The people who once sent my luggage to Los Angles by mistake were never so sorry. Clipboard lady told me that the radiologist had seen my scans and wanted to make a little change. Dr. Colin had asked for a scan without contrast, but the radiologist wanted me to have it. I told her I was fine with that. She said she had to call Dr. Colin to get his permission, and slipped off with her clipboard.

And for the first time all day, they had my attention. CT with contrast. We hadn't done that for a long time. To be honest, I don't really know what that means. They inject a iodine dye into your blood and it helps things to show up better, I guess. What things? What did the doctor see? Why had this taken so long? Were the Republicans behind this? The Illuminati? Muslim extremists? By the time CatScanMan came out and called my name, I was full of questions and theories. He was also very apologetic. I was getting a little tired of having my butt kissed. Just stick the needle in and scan me already. CatScanMan was very nice. He reminded me of a very large elf. He waited with me in the hall until it stopped spinning so I could walk on with him. He was not a cutie pie, and did not offer to hold my arm. I was cool with that.

I took off my glasses and ID tag one more time and plopped down on the table by my old friend, the CT scan. CatScanMan found a vein and stuck me, then I felt the weird warmth of the contrast fluid flowing in. The radioactive PET scan stuff is cool at first, then there's no sensation at all. The CT scan contrast stuff is warm and you can feel it as it travels all through you. I guess it affects everybody differently, but it always seems to settle in my crotch. My butt crack gets hot and I feel like I have to pee. Oh the wonders of modern medical science.

We made small talk as he set up the machine. This banter has been a part of my routine throughout the past year.

"I sure am enjoying this more than the last time I was in here?"

"Why is that?"

""Cause they found cancer the last time."

"Really? What kind?" Part of me wondered why he didn't know that already, and part of me wondered if it was important.

"Head and Neck. Squamous cell. In my tonsil and neck."

"Squamous. OK." He was much too interested. I wanted more small talk. I wanted him to apologize again. He positioned my head and left the room.

"Hey, I'm wearing dentures. Does that matter?" No answer. The sled rolled in and out of the donut scanner a couple of times.

He came back to my side. "What kind of cancer did you say you had?"

"Squamous cell carcinoma. Do I need to take out my dentures?"

"No. No. That's fine."

Dude? What's with the furrowed brow in your voice? It's just a little cancer. Nothing to worry about. The docs took care of it. Now take your pictures, and prove me right.

As the sled rode back and forth, I realized that I was now in a state of growing paranoia. This was supposed to be a celebration day, a victory lap, a ticker-tape parade. I mean, you can look at me and see I don't have cancer. Why are these people making such a big deal of what is really just a formality?

When the test was finished, I was wide awake. CatScanMan pulled off the tape (always the worst part,) slipped out the needle, and taped a big wad of cotton over the hole. Then he said the worst possible thing he could have said under the circumstances.

"Well. Best of luck to you." He sounded like an undertaker.

Best of luck? Best of luck? Are you out of your mind? I searched his face to try to see if he had spotted anything on the screen. After all, it was a CT tech who first saw my saddle embolism. These guys know what they are looking at. He gave me back a poker face, not at all the jolly, contrite health care elf he had been before the scan. By the time I left the building, I had just about convinced myself that I was going to die. Mr. Mellow had transformed into Mr. Anxiety at the drop of an IV needle.

OK. Deep Breath. None of these things means anything. These are just things that happened on my way through someone else's melodrama. My brain knows that I have to wait a week for the results, so my imagination is filling in the empty space with a little drama of my own. I'm fine. I know I'm fine. I run 10 miles a week. I'm doing a 5K this weekend. I do plays. I love my wife. I play with the dogs. I'm fine.

And just a little worried. Next Wednesday can't some soon enough. Good thing cancer taught me all this patience. I'm gonna need it.

Peace,

Pennsy

#325: When Cancer Hits the Re-set Button

The University of Kentucky
Arboretum

This was a busy day. I saw my therapist, my throat surgeon, and had a good, short run at the Arboretum. Now we're sitting in the steamy wake of what felt like our first summer storm. It's a beautiful night in the Bluegrass.

Today's run was a strong one. I did two miles in 24:26. One of my goals is to break a 12:00 mile, and I'm slowly sneaking up on that one. My Nike+ sportband says I've already broken that, but I don't really trust it for such short distances. Run/Walk/Run intervals seem to confuse it. I'll wait until I can run a measured mile someplace. In any case, I know I can run at that pace, and hope to use that confidence to run stronger at longer distances.

I felt good during the run, with only a little stiffness in the tender right knee when I finished my cool down walk and got back in the car. By the time I got home though, I was feeling downright gimpy. I went out on the porch with the dogs and an ice bag. We enjoyed the sunshine as the aching subsided. It's still a little weak, but I expect it will be fine in the morning.

Adidas TR2... Not a bad shoe, but
is it the wrong shoe for Pennsy?

I'm really starting to wonder if my Adidas shoes are the problem. The two times my knee has felt really bad after a run, I was wearing them. I bought them from a department store, without the counsel of the geniuses at John's Run/Walk Shop, so I may have just picked up a pair that don't suit me. I'll try the Nikes for Thursday's run, and see if there's any improvement. If so, the Adidas just might turn into my registration for the Running 4 the Sole 5K on the 22nd. They'll make some big-footed trail runner very happy.


Today's visit with Dr. Colin, my ENT surgeon was terrific. My weight is down, My body fat percentage is down, my blood pressure is down, and the endoscope revealed nothing even a little interesting in my nose or throat. Dr Colin was in an unusually talkative mood today. We chatted about my play, (he had seen a picture in the newspaper about the heroic cancer boy.) We discussed my running and my plans for the 10K in July. "It's something I had often thought about doing," I said, "and now I've added it to the list of things I'm not going to put off any more." He smiled talked about how cancer changes your perspective. It is as if the experience hits the re-set button in your life. Cancer unplugged all my circuits and we are in the process of re-booting me. I told him I felt like a cliche, running on about how much I've learned to appreciate live since surviving cancer. He said not to worry about it. There's a little bit of truth in every cliche. That's how they get to be cliches.

We scheduled my 1-year PET/CT scans for next week, with a followup the week after. I think that will be the day where my status will officially switch from "in remission" to "cancer-free." Good old NED. "No Evidence of Disease." I'd say I've got my fingers crossed, but frankly, the possibility of the thing still being there hasn't even occurred to me. We'll see if I can stave off the "scan-ziety" for the days between the tests and the appointment where the Doc reads my radioactive tea-leaves.

The appointment with my therapist, (now a monthly, not a weekly affair,) was a very enlightening one. I realized that I am starting to turn my attention outward. When I was sick, all roads lead to Pennsy. I didn't think about anybody else. I didn't have the energy. All I could think about was getting through the next hour of sleeping or crying or laughing or puking or whatever life had in store for me during those sixty minutes. As my body started to heal, I had to turn my attention to my soul. It had taken a beating during treatment, but was pushed to the back burner while my survival was an open question. Getting back into therapy, back to church, and back to a daily routine were essential parts of healing my soul. Getting back to the theatre was just the prescription for healing my spirit. Now I've done three plays since treatment finished, and I feel like I'm right on track, doing the work God made me to do in this world.

Echo and Narcissus, John William Waterhouse

Which leads me to this morning's epiphany at the head-shrinker. (Mrs P has stopped protesting my use of this term since one of her teen clients referred to her as his "Nut Doctor." That makes "shrink" the official lesser of two evils.) I realized that I've started asking myself what Mrs P needs. The shrink and I talked about the ways I have left her out of the equation of my decisions in the past, and how I might change that behavior going forward. I was so excited that I called her from the parking lot and left a voice mail asking for an "appointment" with her so we could talk some of these things over. We're making plans for the final big push to get moved out of our house, and the project just might turn out to be an opportunity to strengthen our marriage, rather than being a trial by fire. That would be a welcome switch.

Something tells me that the shrink is moving up on Mrs P's Christmas card list.

Peace,
Pennsy

MORE CONTRIBUTIONS CAME IN YESTERDAY! We're up to $275 for the fight against diabetes. You can help sponsor Pennsy in the Lexington Step Out: Walk to Stop Diabetes by clicking this link and making a contribution.

#167: PET friendly

Getting a PET scan is an intense experience. The facility is in a separate building from the rest of the hospital. They use a lot of radioactive whachamacallits in there. I sat with a nurse and recited my medical history one more time. This is sort of the hospital version of "What's your major?" They have your history in the computer, but they ask you all the same questions over and over so they can get to know you. It's OK. I love talking about myself.

A lady in scrubs with a clipboard came into the room and told me it was time to go to the scanner. Mrs. P asked if she could come along, but they told her "No". Radiation.. Scrub Lady led me out the front door and around the building to a large trailer that was parked in the lot. We stepped onto a lift gate, like the one on a delivery truck, and were raised up to a rolling steel door. I was starting to feel like Maxwell Smart.

A second tech was inside. She answered our buzz by raising the door and letting us in. The door rumbled back down behind us. The place was lovely. Carefully designed lighting fixtures. Well crafted cabinets and molding. A small side room with a comfortable recliner for me to sit in.

While Scrub Lady put an IV in my arm, the second tech put on a face shield and gloves - sort of like Homer Simpson's opening credits outfit. She opened a small metal canister and removed a vial. I was relieved to see that it did not glow. Smiling, she injected the mystery isotope into my IV line and they shut me in my cubical. I noticed that the steel door was about three inches thick with a small heavy glass window.I could have been in any medical office in the world. Or a CIA interrogation room.

I had to wait for about half an hour in the silent glow of the MR-16 lamps hanging from the ceiling. I breathed slowly, trying to relax. When I closed my eyes, I could hear muffled conversation through the door. From my chair, I could see the door of the treatment room at the other end of the trailer. After a few minutes, both techs rose and went into that room. I saw a young woman coming out. She had a red bandanna on her head, and her face was gray and tired. She smiled and laughed for a moment with the attendants, then Scrub Lady pushed the button and the great steel door rolled up. The two of them left gingerly.

The second tech opened my door and said it was time. We walked through the windowless work area into the treatment room. A PET scan looks a lot like a CT scan. It's a big white donut with a table that slides you through the hole. I had to remove my watch, my metal ID necklace and belt, then my jeans (rivets, you know). She had me lie down on the table and covered me with a sheet. I found a comfortable position and she told me to lie still for the next twenty minutes. The donut started whirring and the table started sliding. I thought about the woman in the bandanna. Would that be me in a few weeks? How long had she been sick? Was she going to live? Her cheerful spirit was evident, but so was the toll that the disease had taken on her body. What the hell was going to happen if they found out that I have Cancer?

I closed my eyes and went to sleep.

When Scrub Lady led me back to the main building, I saw Mrs P in an earnest conversation with another woman in the lobby. I asked to use the rest room and they led me to a special toilet in the corner of the facility. You can't go just anywhere when your pee is radioactive. I turned out the lights to check, but it didn't glow either. When I was ready to leave, Mrs P hugged her new friend and they exchanged phone numbers. That's just the kind of woman she is.

"She was nice," I said, once we were outside.

"Her husband is terminal."

I took her hand, and we walked wordlessly back to the car.

#165: In Which Pennsy Learns Something Might Be Wrong

Early in March, I trimmed my beard. It had gotten pretty shaggy, and Spring comes early to the Bluegrass. I had noticed a swelling in my neck, but figured it was just an inflamed lymph node caused by a cold or my lousy gums. They ache from time to time, but the pain always gets better eventually. Once my beard was cropped though, I looked in the mirror and was pretty surprised at just how big this swelling was. I was used to feeling them. I was not used to seeing them. Mrs. P confirmed that something was certainly out of order and we made an appointment to see the family doc.

I was expecting penicillin and the usual spiel about how I need to lose weight. Instead, Dr. Hall ordered a CT scan and a consultation with the Ear, Nose, and Throat surgeon. She also ordered a fine needle biopsy.

A few days later I had the scan before work, then waited a week to get in to see the ENT surgeon, Dr. Colin. His RN took a long medical history from us and read my vital signs. Pretty standard stuff. Dr. Colin came in and the room turned into a tech lover's paradise. First he looked in my ears, nose, and mouth using one of those little flashlights that they all have. Then he screwed this optical cable gizmo together and shoved a camera up my nose, through the sinuses, and down my throat. The weirdness of this sensation was far outweighed by the coolness of the experience of seeing my innards on a big color screen. He even showed me my vocal folds and let me see my voice-box working. We saw my pharynx, my tonsils, all the little parts I had studied in school as an actor and singer. It was awe inspiring. I expected him to withdraw the endoscope and show me where I had Mono or Strep Throat. Instead, he turned to the computer monitor and brought up the images from my CT scan.

As he scrolled through the pictures that represented my head and neck had I been shoved through a deli slicer, his cursor came to rest on a large bulging mass on the right side of my neck. It looked like a balloon with a rubber band wrapped around the middle. I had never seen a CT scan before, but Mrs P had. She spent a year working as a social worker with Hospice and had helped lots of patients through meetings like this. I heard her catch her breath. She was seeing something I didn't.

Dr. Colin showed me how the mass was not just a lump on my neck, but actually extended all the way in to my throat. My jugular vein and carotid arteries were being pinched in toward my spine and my windpipe was deflected severely to the left. He told me that it seemed to have originated in my Tonsil. We would need the PET scan to be more certain, but there was a real concern that this might be "cancerous." Mrs. P asked some questions I didn't understand, and we thanked the doctor for his time.

The ladies at the reception desk were very nice about setting up the PET scan and a follow-up visit. They also cancelled my biopsy. No time for needle pricks. We left with the distinct impression that time was becoming precious.