talk to you later - too tired right now

Well, its 0555 and I’ve been up about an hour and a half.

Waiting on my blood work to get back to see if I can go home this morning, tonight, or tomorrow. My stomach is doing cartwheels, but that’s okay. The thought of having breakfast is enough to make me vomit. Blech!!

This even numbered block has gone much better than it did the first time I went through it. Not quite sure why. Maybe it’s because I was more active this time, or maybe it was because I am more aware of expectations, etc. Who knows?

I think I’ll go back to sleep now and add to this post later. See you.

Peace,

Bill

1/2 way thoughts

As I close out my fourth block of chemo and pass the halfway point in this I am considering what I’ve learned so far and what I think.

First.  I’m tired – bone weary. I’m sure it’s partially from this round of chemo, but I am truly sick and tired of being sick and tired. It’s such hard work; it’s harder than anything I’ve ever done. It’s harder than Officer Candidate School, the Infantry School, Airborne School, Jump School, and graduate school all put together.

I think the Beatles said it best – It doesn’t exactly fit, but heck I’m tired

I'm so tired

I'm so tired, I haven't slept a wink

I'm so tired, my mind is on the blink

I wonder should I get up and fix myself a drink

No,no,no.

I'm so tired I don't know what to do

I'm so tired my mind is set on you

I wonder should I call you but I know what you would do

You'd say I'm putting you on

But it's no joke, it's doing me harm

You know I can't sleep, I can't stop my brain

You know it's three weeks, I'm going insane

You know I'd give you everything I've got

for a little peace of mind.

Second – I’m thankful. I know there are more people who love and appreciate me than I realized before. There is a mass conspiracy out there of people attempting to do me good. I’m not sure many people can say that. I’m thankful for my family who’ve really come shining through during this. I’m thankful for a wife who is truly better than I am; who I’m sure is shouldering an enormous burden and doing it with grace even though he husband can be a shit. I’m thankful for the support I’ve gotten from the Delaware Department of Labor.

Third – I’m sorry. I’m sorry that I haven’t kept up with my correspondence and phone calls. It’s just so hard when you’re tired. I’m sorry I haven’t written more poetry during this period – I think I have something to say, but … I’m really sorry I didn’t get off my ass and visit old friends before this all happened. There’s so many I should have visited, but haven’t – Ned to fix that.

Fourth – I’m optimistic. I envision a positive outcome. I am cancer free – even though I have to finish the chemo – and will remain cancer free for many, many years. Sure cancer will probably kill me someday, but by that time it will just be one more in a host health problems trying to kill an octogenarian. It’s true that going through something like this gives one a different perspective. I’m not sure if the air smells better, or the sun brighter, but I do know the things I used to get insane about don’t seem to matter the way they did – with one exception.

Fifth – I hate my kitchen. No matter how hard you try, the kitchen in my house never gets clean. There is no storage space and there is always an errant thing somewhere where it shouldn’t. I’m sure it’s more symbolic than reality. Before I got cancer I had plans to tear out or resurface the cabinets, paint the walls, buy some storage unit stuff, and generally redo it all. Now the kitchen sits there laughing at me. Someday Kate’s going to come home and find the worn out white veneer counter tops stripped off strewn about the ceramic tile floor and me in the parlor fast asleep in a recliner from chemo overexertion. Boxes of southwestern themed colored counter tiles will surround me.

Sixth – I miss going to work. I like work and I like the people at work – even the ones I don’t like – it’s complicated. I like the projects my bosses ask me to do. I like being creative and aggressive while operating within the complexities of regulations. I like telling jokes and quipping at work.

I guess that’s it for now.

Love to all

posting late today

Hey guys:

I was up late last night getting chemo and such. I'll be posting later today.

Good Morning Gang:

First things, first. It’s 0625 and I am having a great cup of coffee in my private room in the Bone Marrow Transplant Unit. I’m living large this week. My room number is 6C23 and the phone is 302-733-6123. Don’t be alarmed; I am in the Bone Marrow unit because its walls are soundproof (actually there is renovation going on and this was the only room at the inn).

Started chemo last night and as you know, it goes 24/7. So I was up all night, but luckily I had some great nurses working on me, so what could’ve been a miserable night was okay.

A little freaked out about my blood platelets – they continue to drop. Who knows why? I am told it’s pretty common for chemo patients to have fluctuations. As many of you may know I can agonize over a tidbit – sometimes to my own detriment.  In fact I’m doing it now. What does a drop indicate? Is there a hidden problem? Is there some kind of bone marrow problem now?

Even so, I am still within the safe zone for riding the stationary bike they have, So when I finish this I’m going to ht that for about 20 to 30 minutes just to burn some calories and get all the blood and lymph moving. I think I mentioned that we actually have two circulatory systems in out body – I’m not a doctor, but I pretend I know something. There is the blood system that transports oxygen and impurities to the organs so they can do their jobs. The other is the lymphatic system that uses a chemical called lymph (hence the name lymphatic system) to carry white blood cells around and dispose of impurities – that’s all I know about what it does. Anyway lymph pretty much only moves when you do – either through exercise or gravity when you are doing day-to-day stuff. So it’s GOYA for me. What’s GOYA you may ask? It’s not only a popular Spanish Food brand -- it’s also an acronym -- Get Off Your Ass.

Anyway, back to platelets. I betcha I’ll get a transfusion sometime this week and jump-start the platelet rebuilding. That’s okay with me. Need to relax and have faith and trust the process.

Anyway in a vain attempt to establish some control of a situation that’s out of my hands I’ve started a spreadsheet to track my blood numbers to see if there is a pattern to it all. If there is a pattern to how my body is reacting, maybe I can anticipate the peaks and valleys and not get freaked out. If there is no pattern, then I just need to chillax about it all.

This is a picture of me last night after my chemo premedication of Demerol, Benadryl and Tylenol. As you can see, I’m a bit buzzed from the cocktail.

I guess that’s it for now.

Love to all,

Bill

platelets, exercise and admission

As you guys know I’ve been fighting with my platelets recently, but one thing you may not have know is I’ve embarked on an exercise program to help with my chemo recover. I started lifting some weights and riding my bike. Many of you have expressed – rightly so – some reservations about my approach, primarily because of the heat, but also because I sometimes lack good sense and am overly aggressive.

I found this article at livestrong.com, the Lance Armstrong site. It is one of the few places I’ve seen exercise suggestions specifically related to platelet numbers. That’s pretty cool.

Anyway, I am going to the hospital today to finally begin block #4 of my chemo. I should be there ‘till Sunday/Monday. This delay may have actually been a blessing. It’s given me an extra week to rest and get a bit built up. As I’ve mentioned before, the even numbered blocks are tougher on me than so the extra week of chillaxing may have been a good thing. Regardless with only for more to go – I am at the winning phase of this.

Love to all,

Bill

Causes

Many health situations cause low platelets. They include rare inherited disorders; diseases affecting bone marrow, such as leukemia; chemotherapy; kidney dysfunction; autoimmune disorders such as rheumatoid arthritis and lupus; viral infections; reactions to blood transfusions; excessive alcohol intake; and low levels of vitamin B12. Some people also develop chronic low platelet levels for no apparent underlying reason, a condition known as idiopathic thrombocytopenia.

Exercise Considerations

Exercise can cause very small injuries to tissues and small blood vessels, a normal occurrence, notes the Leukemia/Bone Marrow Transplant Program of British Columbia. These injuries usually heal easily because platelet cells stop any bleeding. When platelet count is low, bleeding is not stopped effectively, causing purpura, abnormal bruising and more serious effects. People with low platelets who cut or scrape their skin, for instance, can bleed so severely they need emergency attention.

Exercise Recommendations

The Leukemia/Bone Marrow Transplant Program of British Columbia provides specific exercise recommendations for different levels of low platelets. Limit all activity when the count is less than 15,000. When platelets are 15 to 20, you may do gentle exercising that does involve resistance. This could include exercising while sitting or standing, gentle stretching or taking an easy walk. A platelet count of 20 to 40 allows you to use some light resistance, such as weights or latex bands. You can walk faster and climb stairs. At platelet levels of 40 to 60, add exercises such as stationary cycling and golfing. Higher levels, that are still considered too low, allow for aerobic exercise such as biking and jogging, but require wearing proper gear and taking caution against injury.

Read more: http://www.livestrong.com/article/339420-exercise-low-platelet-count/#ixzz1TIVrwWAu

Tuesday, July 26, 2011

Good Morning My frends

If I were a betting man, I’d bet that I’ll be admitted for chemo today; I’d bet my platelet numbers are up; I’d bet I’ll be miserable by midnight; and I’d bet I’m the luckiest guy I know.

A bunch of folks put together a collection of stuff for me to take to the hospital so I wouldn’t be bored or hungry. What was envisioned – I’m sure – as a care package, turn out to be an outpouring of love and support that overwhelms me. I am truly not worthy of this outpouring of affection, but I’ll take it in the spirit it was given. I am very, very grateful, humble, and by the way -- right now-- full of Lorna Doones.

I consider every morsel, book, CD, and cookie an expression of support and love. And given the mountain of stuff (It took a hand truck and pickup truck to get the haul to my house) I am loved and supported beyond anything I could imagine.

I don’t want to quote Lou Gehrig about being the luckiest man on earth, well … because he dies at the end of the movie, but I know how he feels – thanks to you guys.

Love to all,

Bill

Card Winners!!!

Monday, July 25, 2011

I was originally going to override the judge’s decision and declare my wife the winner because … well she’s my wife. But Buzz – ever the arbiter and defender of doing the right thing – er, ah, backed me into a corner shall we say and made me see things clearly.

So it is with great pride I announce the winner of the first and last stupid funny card contest. For her dog wearing an Elizabethan Collar card the winner is Barb Reilly from Voc Rehab. Yay! She wins lunch with me at the restaurant of her choice (come on Post House!!)

Second place goes to steely-eyed killer and all around nightmare maker Master Sergeant David Maloney, U.S. Army, from -- well I can’t tell you that or he REALLY would kill me. For his office pregnancy card. He wins an autographed picture of me and a promise of lunch someday.

And third place goes to Tom MacPherson (because he is a director he really should have won, but Buzz insisted on keeping this thing honest). His entry was the “My replacement” Card. Third place wins a wallets sized picture of me and a Snickers Bar (if there’s any money left after Barb spends it all at Checkers). 

Hey Guys:

Even though this seems like a silly little thing, I really appreciate every card, letter, and prayer that has come my way. I am truly blessed and in a lot of ways it because of you guys. I am keeping every card for the rest of my life. 

Kate and I are planning a big shindig for the Fall when this cancer thing is all over and of course you all will be invited. 

Love to all,

Bill

Tick, Tock Tick, tock

Good Morning Chemo13:

Well. I’m up and not so at ‘em as I’d like. A little Sunday hangover from Spaghetti and Meatballs at Michaels last night. I really hadn’t planned to out all ‘cause I was a bit fatigued, but my sister was driving by from RI to NC so she called and we had some chow.

I’ve had a hankering for spaghetti for a few days now. My favorite place is Café de Napoli on Main Street in Newark, but rumor had it that downtown was too crazy yesterday. Kate said Michaels did a nice job and is right off the highway so my sister Mary Lou and her husband Buddy could just jump back on I-95 after dinner.

It’s funny I usually fade at about 2:30 p.m., but I was able to hang through dinner last night.

This one-week delay for chemo—due to platelets numbers – is kind of a weird. I am generally feeling a bit better as the side effects from last round of chemo fade a bit, but I know the next round will probably begin Tuesday. And the side effects that are hanging around in full force are the most nagging – everything tastes like a mixture of metal and dirt and I’m really tired. Oh well. Or as Vonnegut would write, “ho hum.”

Card winners announced tomorrow.

Peace to all

Bill

Not much today

Good Morning:

I’m still at home cooling my heels waiting for these platelet numbers to go back up so I can get on with the chemo.

You all know Borders is closing? Well, don’t rush over yet; the bargains are kind of slight. I went over to pick the bones of their business model and it was only like 10 percent off. Shoot, everything is 10 percent off most days over there. The scuttlebutt I’m hearing is they’ll close August 5^th.

I guess that’s it for now. Nothing really to update you guys on.

I’ll holler back at you tomorrow.

Peace,

Bill

No hospital 'till Tuesday

Dear Chemo 13:

I am feeling somewhat verbose today and really have to avoid the compelling, er ah, poop – I am having a chemo brain attack and lost my train of though. Darn!

In case you guys hadn’t noticed there are often typos in these notes because I am generally lazy – only kidding. I try to catch the errors but I suffer from the same thing all of you do; we are each are own worst editor.

Anyway to the news:

In a stunning surprise Bill Potter was sent home Thursday from the Helen F. Graham Cancer Center after his blood work revealed his platelet count was still too low to be admitted to the cancer ward on 6B of Christiana hospital.

“It’s kind of a drag,” said Bill. “I was originally supposed to start block four on Monday, but the numbers just weren’t there. The good news is I get to spend the weekend with my wife and smooch her.”

Officials from the Cancer Center said Bill would have to come back Tuesday July 26 and he would most likely be admitted then if the platelet number were over 100.

“He is at 84 right now,” said hospital bigwig Sally Smackety Smack. “For his own safety it has to be at that 100 level. Once he’s there, it’s off to chemo treatment.”

Though not a doctor himself, Bill often does research to assist with other patients. This time he did some detailed research about his block of chemo and the drugs used.

“The platelet situation is really a big deal for this block of chemo because the treatment uses a drug called Methatrexate,” Bill said. “Methatrexate is a bad whammer-jammer. It attacks just about every fast dividing cell in your body and seems to have a special appetite for platelets and red blood cells.

“The thing is, methtrexate will make me anemic and susceptible to spontaneous bleeding and bruising. The last time I had this block of chemo I ended up getting blood and platelet transfusions. It’s all pretty scary for most people, but not me; Okay I cried like a baby.”

The delay puts Bill a full week behind on his aggressive chemo plan.

“I had this stuff planned out to the day on a spreadsheet and everything. I hate it when timetables get deviations. It makes me cranky.”

The other thing making him crazier – as if that were possible – is there is no dietary way to increase platelet production or augment red blood cell production.

“I thought eating a few steaks could have an impact, but that’s not how it works. Any impact via diet is so insignificant as to be barely measurable, so I have switched to jelly donuts,” Bill said. “What the heck a rare steak is red in the middle, so is a jelly donuts …. it’s a no brainer.” 

Platelet Update and other craziness

Amigos:

It’s about 0500 and a wild gang of puppies has attacked me, otherwise I’d still be in bed. The four judges – doggies of the a-pack-of-licks – jumped on the bed a little bit ago demanding breakfast.

The got their chow and now they’re asleep and I am wide awake getting ready for what I believe will end up being an admission to the hospital for chemotherapy. The reason I think so is last Saturday this unexplained nasty bruise showed up on my right hand. This can be a sign of a platelet problem. Well the bruise is now rapidly healing and that probably means my platelet count is on the mend. Whether it is mended enough to begin this block of chemo is for a blood draw to decided later this morning.

Those of you who have taken the Myers – Briggs personality profile will not be surprised to discover I am mostly an Extroverted Intuitive Feeler Perceiver (ENFP). This group has a lot of traits all pretty much played for great comic effect by Jack Klugman as Oscar Madison in the “Odd Couple.” Anyway one of the traits that doesn’t get much notice is that ENFP’s can see patterns developing and often come to the right conclusion with a lot less information than other people need. This combined with my 21 years of military experience and the attendant obsession with being on time, has me a little on edge as I look over the chemo horizon.

There is an old saying Army saying, “No plan survives first contact with the enemy.” I bring all this up because we are now four days behind chemo schedule and since this chemo is so meticulously timed I am hoping we are still within whatever variances the doctors have built in to the prescribed pattern of treatment. I hate chemo, but I hate being late more.

BTW my personality profile is the exact opposite of the majority of Army officers; they tend to be Introverted Sensing Thinker Judgers (ISTJ). Over the years that difference has helped me, because most leaders I’ve had have put me in “people jobs” or “big picture” jobs. Just a side note.

That was a weird tangent.

Back to today. At about 0800 or 0830 I am headed over to the Cancer Center for the blood draw; then I’ll know something.

I’ve purposely gained about 12 pounds. I weighed in at 230 the other day, up form 218 a month ago. MY doctors were worried I lost too much weight too quickly and I was worried that I need to put some blubber on in case the cumulative effects of the chemo begin causing me to lose weight. Simply I wanted some fat in the tank in case I need it later. I won’t tell you how much total weight I’ve lost in the past 90 days because it would reveal what a roly-poly fat boy I really was. Yikes!

Love to all and talk to you soon.

Yes I am a happy camper

Good morning everyone:

Yes I am a happy camper. In fact I am gloating. I know it’s bad luck, but I am gloating nonetheless. Getting a good punch in at this cancer really has done a lot for my vibe. I am spectacular – not only that, this cancer probably won’t kill me for another 25 or 30 years (it probably will someday, but that’s cool).

Those of you who enjoy dance would be appalled right now: I am dancing in my underwear -- a sight that usually blinds my wife temporarily.

Kate and I were talking last night and if this treatment continues to do its job and I get side effects and be miserable for the next few months – so what? I can do a few months of puking, diarrhea, insomnia, and all the other chemo crap standing on my head because I already know the final outcome. It’s like the Americans entering WWI – The central power screwed when Americans showed up. Ludendorff should’ve just quit while he was ahead – Allied victory was a done deal; the allies just had to fight the war to bring it to the inevitable conclusion.

I’m pretty sure that’ how this is going to be as long as I don’t anything stupid, or something pops up I have not anticipated.

Speaking of chemo things I haven’t anticipated. I am still at home waiting for my platelets to recover before I can begin block four. I am supposed to get blood work Thursday to ensure my blood is good enough for chemo. If it is, it’s off to Christiana Care for four to five days of relaxing drip, drip, drip.

cards 2

Hey guys:

I'm still home. The earliest I'll go to the hospital is Thursday. My red blood cells and platelets are still too low.  I called the City of Newark to have them survey my property -- there must be some Kryptonite on my land. That' all I can figure.  Here are some more cards. I didn't put the insides of the cards on the post because some of them are very personal, the others make fun of me.

Mor cards tomorrow.  The judges are deliberating.
Bill

CT Scan report draft 1

Gentlemen:

Good Morning. I thought it important to send you a serious update in lieu of a lighthearted note.
Yesterday afternoon I received some wonderful news. My CT scan could find no evidence of abnormal growth in the area where previous cancer had been seen. That’s great news and a great first step in toward our ultimate victory.
But it is important to acknowledge we are at the beginning of a successful end state; we have not arrived there yet. There is still a lot of fighting left to go. Because Burkitt’s is a highly aggressive, sneaky, and insidious cancer my doctor tells me I must complete all eight blocks of the prescribed chemotherapy even though there are no visible abnormalities today. We must push the attack to ensure we annihilate the cancer cells both at the visible abnormality level and at the microscopic level. That will (unfortunately for me) take the full course of treatment.

I didn't go to the hospital yesterday, because my platelet and red blood cell counts were too low. Apparently, I'm too sick to be in hospital. I have to get blood work done every morning until by blood levels pop up and they can admit me to ... well knock them down with chemo.

Bill


Thanks,

Bill

NO Post today -- This is a post damn it

Chemo 13 -- Well it's a little before 5 a.m. and I just rolled out of bed.  Getting ready to go to the hospital. I'm all packed. I'm due at the docs at 1240 and then off to Christiana.

Had a good weekend. My brother Fred and his wife Pat came over. We didn't do much, but chat and nap. It's always great to see them; they've been super supportive and loving since this whole thing began.

We had originally planned to go to a Blue Rocks Game Saturday night, but I ended getting freaked out by some chemo side-effects like swollen ankles and some unexplained bruising. I figured better to err on the side of caution in case there was a platelet issue.

That's it for now. I'll report what the doc says later on.

Love,

Bill

Potter To Begin Rein of Humor Monday

Potter To Begin Rein of Humor Monday

Chemo Set, Word On Scan Due

WILMINGTON, Delaware – Serial workplace disruptor and all around nice guy Bill Potter will return Monday to Christiana Hospital’s 6^th floor to begin 96 to 120 hours of chemotherapy.

            “We’re trepidatious (if that’s even a word),” said long-time hospital administrator Beth Scalpeletta. “Bill is always a great help, but as you know he can distract the nurses. It’s not just his rugged good looks, but it’s that damn infectious laugh.

            “It’s come to out attention that Mr. Potter may get out of his bed every morning, change into street clothes, and work on little projects as if he were at a job,” Scalpelatta said. “A pajama clad Bill Potter is almost irresistible, can you imagine a fully clothed one.”

            Mr. Potter, for his part thinks it all much ado about nothing.

            “I’m still on the fence about my chemo wardrobe choices,” he said. “I’ve asked quit a few of my buddies add their thoughts, and I really got a lot positive feedback about Speedo Swimwear. Although I am not usually the enter of attention, maybe a low cut Speedo would help doctors access me better.”

            Regardless of his choices, Mr. Potter will begin block four of his eight-block regimen Monday after a brief visit with his doctor  at the Helen F. Graham Center.

            “Monday is day 21 and those are always unusual days,” Mr. Potter said. “First, they’ll check my blood to see if I am healthy enough to poison with chemo. If I’m good they’ll ship me to ward 6B at about 1 p.m. Then it’s off with the clothes, vitals checked, and tubes hooked up. A little later we’ll get the first round underway with my Demerol cocktail and it’s off to the races.

            Although that’s the usual sequence, a new wrinkle is set for Monday.

            “I’m either going to show up at the hospital doing a dance, or my shoulders will be slumped and my heart heavy,” Bill said. “I had a CT scan Friday to see what kind of progress we’ve made so far and I’ll find out the straight skinny Monday. It’s blue skies or grey. MY anxiety level is pretty high.

            “Regardless, I will do what I always do – Bruise easy and heal quick and continue the fight.”

            “This is just another reason why he is so disruptive,” Scalpeletta said. “If we give him bad news, he thanks us for our understanding and asks if he can help. He is just so dam, handsome, graceful, and considerate it makes the nurses rally to his side.  All that goodness makes me want to puke.

            “It’s gonna be a long week.”

            Bill can always be reached a Lettice123@yahoo.com. He will post his room # Monday on his blog 

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