Scan thoughts -- Reader discretion advisory (bad words)

            “Mr. Potter, sweetie, can you fill out this paperwork before we begin the CT scan?” Felicia asked. “The top one is your privacy notification and the next one is just some general information about medical history.”

            “Sure no problem,” Bill said looking through what appeared to be an unusually small amount of paper. “Usually it’s volumes,” he thought. Let me see

            Reason for scan? – Cancer update

            Have you ever had a CT scan here before, when? – Yes late April

            Have you ever had brain surgery? Yes Ommaya Reservoir Installation

            Have you ever had cancer, diabetes, heart problems? – Yes, I have cancer now and am undergoing chemo.

            Shit, I remember less than two months ago I used to answer all these no.

            “Felicia, I think I’m done. This is the truth, as I know it anyway.”

            “Okay sweetie, Michelle will take you back for you scan. Just meet her at that side door.”

            Bill looked quickly around and saw a beige security door connecting the waiting area with the scanning rooms. A dark haired woman dressed in scrubs adorned in elephants opened the door from her side.

            “Mr. Potter,” she asked.

            “Yes.”

            “Come this way,” she said motioning to a big room with a CT scan machine. The machine took up most of the floor space with its long rolling bench feeding what looks like a giant white donut of electronic beeps and burps.

            From the adjoining control room, Olga another nurse came out.

            “Mr. Potter? How are you today?” She asked.

            “I think I’m okay. Why? What’ve you heard?

            “I heard you’re a great guy.”

            “It’s true. I am.”

            “Do you have a chemo port?” she asked.

            Mr. Potter reached inside his shirt and pulled out three strands of white tubing surgically connected to his heart through his chest.

            “I have this three lumen Hickman.”

            “Since it’s not a power port we are going to have to tap into a vein and deliver the contrast solution through an IV,” Olga said. “Is that okay?”

            “Sure. Do whatever you have to do. This scan is about finding out what progress we’ve made since I started chemo. A little contrast among friends is no big deal.”

            Olga smiled.

            “You sure have a good attitude,” she said.

            “It’s masking anxiety at the moment.”

            “I bet it is. Let’s get going and why don’t you lie down on the bench and I’ll get your IV ready.”

            “Is this stuff that makes you feel like you wet your pants?” he asked.

            “Yes, but it shouldn't be too bad today. Most people really get that sensation when it’s colder weather. Has something to do with core body temperature.”

            Bill lay on the long bench that feeds into the machine and Olga produced a hospital blanket from seemingly thin air.

            “Your shorts have a metal zipper, so I need you to drop them around ankles,” Olga said.

            “I haven’t heard that kind of deal since college,” he said.

            “We are a full service operation. Now drop the shorts and get under the blanket while I insert the IV.”

            “Are you all set?” Olga asked.

            “I think so,” he said. “I just had a moment of real anxiety for a second.”

            “It’s okay,” she said. “You’re authorized. This isn’t easy.

            “I’m going to step out of the room and you’ll be given instructions over the speakers. The first series of pictures will be with your arms at your side and then with your arms over your head.”

            As Bill lay on the bench waiting for the scan to begin, he noticed that ceiling above the CT machine was painted pitch black with a series of small lights imbedded in the opaque simulated night sky. He could see the big dipper flicker in faux night, planets blinked messages to far away receivers, and meteors streaking across the limited universe of that room signifying nothing, but it all worked to scare the shit out of Bill.

            “PLACE YOUR ARMS BY YOUR SIDE,” the CAT scan computer voice commanded. The bench began to move and insert Bill’s upper half inside the machine. He was as alone as he had ever been.

            “This is crazy,” Bill thought. “Hail Mary full of grace the Lord is with thee and blessed art thou among women … people get bad news all the time from scans. Suppose we’ve made no progress since this all began … Holy Mary, mother of God pray for us sinners … What would I do if the cancer has actually spread instead of going away? Oh man! … Now and at the hour of our death … How would Kate and I deal with this? … Our Father who art in heaven hallowed be thy name … .

            “INHALE AND HOLD YOUR BREATH.”

            … Thy Kingdom come, thy will be done …. Jesus, I think I’m going to cry. Not in front of these strangers that’s for damn sure … Stop thinking stupid thoughts you are in the drivers seat here … On earth as it is in heaven … How do you know? How do you ever know? Suppose this scan is good.

            “EXHALE AND PLACE YOUR ARMS ABOVE YOUR HEAD.”

            And lead us not into temptation, but deliver us from … deliver us? The only thing I want to be delivered from is cancer. Wow I’m a mess all of a sudden. I guess my positive mental attitude has checked out for the scan … I hope that doesn’t mean something more profound. Maybe I’m not as positive as I think? That’s horsehit.

            “INHALE AND HOLD YOUR BREATH.”

            Amen … I’m completely freaked out now. I have to wait until Monday to get the results and then I’ll know. I bet if there is no message on my phone when I get home everything is good news … if it is bad news, maybe they won’t call on Friday so I won’t worry over the weekend.”

            EXHALE RELAX

            “That’s it Mr. Potter,” Olga said. “Let me get this IV out and you can go home. Have a nice weekend.

            “Thanks,” he said.

Friday Notes

Good Morning Chemo 13:

Quite a bit to say today.

Nighttime sleep is hard to come by sometimes for me. Last night I had a good night’s rest for a change. I went to bed at about 2200 and was ready for stand-to by 0520. Usually I burst awake at 0300 go eat a snack and wander into the parlor and sleep in my recliner until about 0600. So the point is I got a good night’s sleep for a change.

Today is scan day so I get to drink chalky Bloating Barium Berry (the new flavor from Ben and Jerry) for lunch and waddle over to the cancer center for a peek. I am really excited to see how much ass kicking we’ve accomplished in the last 80 days or so.

Since Fred and Pat (My brother and sister-in-law) will be here Saturday at about 11. I have some straightening up to do. Those of you who’ve seen my offices over the years know that I embrace the quote from the Miracle Worker, “Cleanliness is next to nothingness.” But guests don’t see it that way. I’ll have to dust something at some point today.

For some reason I have been slow to return calls and emails lately. I’m not sure if its chemo fatigue or what, but I have been cocooning a bit. I love all you guys, but my enthusiasm isn’t worth a poop the past two weeks. So in the words of George Costanza, “It’s not you it’s me.” Please be patient. Maybe it’s a phase.

This last round of chemo, while not nearly as debilitating as block number two, seems to have hung around for a few days longer causing my blood recovery to be slow and me move in slow motion. Who knows? Anyway, I’ll be reaching out the Kathleen, Smitty, Roseann, Freddy, Gwen, Timmy, and Chip this week to set some stuff up.

I guess that’s it for now.

Almost forgot. Kate bought this snazzy button/label machine. Chemo13 gang button’s are right around the corner.

Love to all,

Bill

Thursday thoughts

Good Morning Everyone:

Well, I feel a bit better today. My platelets are still low, but should bounce back before my admission Monday to Christiana Care. I was going to try some golf today, but I was too fatigued last night and figured it was a bad idea.

I get my CT scan tomorrow. Looking forward to knowing what progress we’ve made. I guess they’ll do the scan and I’ll meet my doctor Monday morning for my pre-chemo chat and we’ll go over it. Weird stuff huh?

I have some anxiety over this upcoming round of chemo because the even numbered blocks are so tough. When you combine that with the cumulative effects of all the drugs it really raises my apprehension. Oh well.

My big brother, Fred is coming down from Boston this weekend for an orgy of fried food. Our plan is to go see the Blue Rocks Saturday evening and stuff ourselves with nitrate cancer dogs. I got some really good box seats on the first base line away from the family section so kid germs shouldn’t be a problem. Blue Rocks Baseball is usually pretty fun.

The card contest is still being adjudicated and our wizened team is almost ready to declare a whiner. 

I guess that's it for now.

Peace,

Bill

some entries

Hey guys the judges are howling at your cards. Here are some of the entrants. I'll post more tomorrow. It's a real dogfight.
 

Greeting Card Judging

 Since I can’t automatically declare Secretary McMahon the winner, it is time to begin the card judging and my crack team of energetic impartial judges will begin today. Announcements tomorrow.

Judge Buzz – Well when he is not eating greeting cards, he is biting the mailman delivering them. Out mailman has to drive a Brinks-type truck or Buzz will eat every card on board. Buzz loves Christmas.

Judge Pearl has long been known for her impartiality and dedication to the greeting card arts. 

Judge Coco just wants to declare Gary Stockbridge the winner. We’ll have to talk. 

Judge Harry (Potter) – Will magically review each card and in wizardly fashion determine the winner. 

Research preliminaries

Tuesday, July 12, 2011

Research preliminaries

I remember walking down the hallway of my first unit’s battalion headquarters it was 2^nd Battalion/34^th Infantry Regiment, 24^th Infantry Division (Rapid Deployment Force). It was your standard cinder block Army building with dark wood paneling on the walls to cover up the austerity of the construction.

The obligatory poorly lit trophy case, the hallway, which didn’t seem to cast much but shadows, and the omnipresent posters about keeping secrets, set the ambience for a stroll down the headquarters hallway. The hallway was lined with doors leading to several “shops” such as personnel (S-1), Intelligence (S-2), Operations (S-3), and Logistics (S-4). Each shop had its own flavor and identity with its own set of irreverent posters meant to drive home specific points.

On the door of the S-3 shop was a picture of John Wayne from one his WWII USMC movies. He is standing with his hands on his hips saying, “Life is tough. It’s tougher if you’re stupid.”

Truer words have never been spoken; especially it seems when you are digging around trying to figure out how to access cancer information, for a small population such as Burkitt’s patients. Jeepers!!

I spent a several hours yesterday trying to track down how decisions are made about chemotherapy dosages and midcourse corrections if needed. The thing is there really is not – as far as I can tell – any place that advises a patient or doctor what to expect or adjust in the way treatment based on a specific set of criteria encountered as they move through a cycle. For example, should dosages be changed based on success or failure of current regimen? How does a chemo regimen exploit success and not reinforce failure?

The thing I am coming to realize is Cancer is Complicated and there is more we don’t know, than do. Slowing growing cancers can have more treatment options than highly aggressive ones because well … there’s more time to adjust. But for cancer like mine, which is highly aggressive, there is little time to adjust and experiment during the treatment phase because every day has a specific task that must be accomplished based on research done at clinical trials. This pushes both doctor and patient to accept risk and at times, hope that results at the end of treatment will mirror the results at clinical trials.

I am discovering that for my cancer there is very little wiggle room as far treatment goes. There is a 95%+ cure rate when adult males go through the entire course of eight blocks of treatment, but there seems to be no available data if the course is abandoned a block or two early. The point is, regardless of how well a patient may do in the middle rounds there is no way to determine whether that success will carry over to a successful end state – That upsets me.

I was hoping that good early results would mean an earlier finish, but the cause and effect I want may not exist. Oh well!

Big Adult Thought

Good Morning Chemo 13:

This could be a good/interesting/disappointing week for us – We’ll have to see. Regardless it is going to require me to, as Kathleen Andersen used to like to say – put my Lt. Col on.

I start block four next Monday and that is the halfway point in the prescribed course of treatment. Before beginning this block I am supposed to get a body scan of some type to determine progress we’ve made thus far. To me this progress peek can also be a decision point.

·      Obviously if the scan shows no movement/reduction in my cancer I’ll be devastated – truly. Even so there is no decision to make; I drive on with the treatment as outlined and get some mental health counseling.

·      If the scan shows a reduction, but not elimination, then obviously we are the right track and I drive on with the treatment – skating away on the thin ice of a new day as it were.

·      But and it is a big one – if as I believe – the cancer is gone, then what? Do I stop chemo early? Do I continue? How far do I go? I need data to decide. Here are some of my thoughts.

o   I have reviewed some research from the University of Texas that suggests adult males with Burkitt’s-type lymphoma have 90 + cure rate after four blocks of treatment. I need ensure my definitions match theirs and the data is in synch.

o   Is there a cure scale somewhere that shows success rates compared to blocks completed. For example, if my scan says I am cancer free and I take six blocks of chemo in lieu of the prescribed eight is there a drop in my short/long-term projections, if so how much of drop? A couple of percentage points? On the flip side, is there a corresponding drop in potential for developing secondary cancers?

o   Where is the point where accepting risk becomes gambling. I am not willing to gamble.

o   Most of the data I see starts with a person starting with stage four and not stage two like me. What sway does that have in all the data analysis?

These are not small considerations and I have to be intellectually and psychically honest as I go through all this. Am I merely suffering from chemo fatigue and looking for an out? Are other considerations driving this than just the cool methodic approach I’d expect from any big decision? If pressed, can/will my doctor prepare a briefing for me with this level of detail in order for me to make a good decision about next steps? If not, what next?

 Love to all, 

Bill