Kate sent this to me

Hey guys:
Kate found this pretty cool reference that kind of explains the process for my chemo. It's not exactly the same, but it gives a pretty good overview of stuff. Some of the drug names may be different than I am getting, because this is a post from the UK. 


http://www.macmillan.org.uk/Cancerinformation/Cancertreatment/Treatmenttypes/Chemotherapy/Combinationregimen/Hyper-CVAD.aspx
Schedule A (cycles 1, 3, 5 and 7)
On the first day of your treatment, you will have cyclophosphamide,
which is given twice in 24 hours. This will be repeated on the next
two days (day 2 and 3).
You will also start taking dexamethasone tablets on the first day of
treatment and continue taking these for four days.
On the fourth day of your treatment you will be given doxorubicin and
vincristine. Doxorubicin is repeated again on the next day (day 5).
You can usually go home the following day if you are well enough.
On day 11 of your treatment, you will have vincristine again (you can
have this as a day patient) and you will start taking dexamethasone
tablets for another four days. After this you will have a rest period,
with no treatment for the next week. This completes a cycle of your
treatment.
After the rest period you will then go on to have methotrexate and
cytarabine (schedule B).
Schedule B (cycles 2, 4, 6, 8)
On the first day of treatment you will be given methotrexate
continuously for 24 hours and this is repeated on the next day.
Cytarabine is given twice (12 hourly) on the second day and also on
the third day. You can usually go home if you are well enough and your
methotrexate levels are satisfactory. This is checked with a blood
test.
After this you will have a rest period with no treatment for the next
18 days. This completes a cycle of your chemotherapy.
After the rest period you will then have Hyper-CVAD (schedule A). You
will continue to alternate between schedule A and B until your
chemotherapy treatment is completed.
When you go home after schedule A or B, you will be given a supply of
anti-sickness tablets to take with you. It is important to take these
as directed, even if you aren't feeling sick. This is because some
anti-sickness drugs are much better at preventing sickness than
stopping it once it starts.
Your central or PICC line will usually stay in place, ready for the
next cycle of your chemotherapy. You will be shown how to look after
the line.
You may need to have your blood checked every week between
chemotherapy treatments or cycles. Some people may need to be admitted
to hospital if they develop an infection or if the number of blood
cells (blood count) is low. A blood or platelet transfusion to improve
your blood count can be given to you during a short stay in hospital
or as a day patient.

A couple of Notes 29 MAY 2011

Hey guys:

It’s been a pretty good day, so there isn’t a lot to tell. Got up early and did some writing. Kate and I went K-Mart and I bought some shorts that fit. I've lost so much weight I am down too damn fat to just overweight. Anyway, I've dropped about four inches on my waist. Take it from me, Cancer is the way to beat weight gain. 

I started giving myself injections of a drug called nuepogen. It’s supposed to bounce my white blood cell count back up after all the chemo I’ve had to knock it down. I guess we’ll see. I am also taking this other chemo steroid Decadron, that’s supposed to help do the same – I guess.

Anyway, I guess this is pretty good news as I their giving me some repair drugs. My downward slide hasn’t seemed so bad. Moderately miserable to be sure, but could have been much worse. No vomiting yet – thank God.

I really haven’t been able to concentrate on much reading, but what are you gonna do? If that’s as bad as things go, then hell that’s good. I went all through college and never read a book.

I’m going to see the doc Wednesday, ostensibly to set up my next seven days of hospitalization. Who knows, there are always surprises. I suspect I’ll go back in June 6^th or 7^th. I still have to have my chemo port put in and they may put me in on the 6^th for that.

This 2^nd block of chemo is supposed to be different than the 1^st. I guess we’ll have to see. Some googling suggests the 2^nd round is the real bad stuff, but I ain’t scared, I’ve got you guys.

I guess that’s it.

Love to all,

Bill

CANCER CHEMO QUIET

Bill's postulating on the use of oil paints versus watercolors in current media.

CANCER CHEMO QUIET

Potter Goes Quietly In and Out Graham Center

NEWARK, Del. – The Helen Graham Cancer Center located on the Christiana Hospital Campus figured out how to deal with the “Potter” question Friday when Bill Potter came to the center for outpatient chemotherapy.

Citing precautions in administering the chemotherapy drug Ritoxin and to ensure he did not have a repeat of the Rigors episode from his first experience; the center prepared an intravenous cocktail of Demerol and Benadryl.

Potter’s ability to disrupt workplaces is legendary. His stories and jokes are often mesmerizing and his advice – regardless of topic – is always on spot.

Simply, women want to talk to him and men want to be like him.

By all accounts, Potter’s chemotherapy went great, but the cocktail produced a side effect that Cancer Center administrators found … well … quieting.

“He was pretty stoned,” said one administrator. “Quiet and in his own little world – at least for a couple hours. It’s kind of a shame though; he’s so damn nice.”

Even when the drugs wore off Potter was not as active as usual. He only visited half the patients in the chemotherapy area and was only called in to advise on one complication.

“I had chemo today?” Potter asked afterward. “That’s cool.

“I need to get a couple of grateful dead CDs. I don’t know what it is about this place, but I feel like listening to 70’s music.”

Potter is still at home and is working on a play about his experiences. You can reach him at 302-738-3418 or Lettice123@yahoo.com.

Lousy Night

When I started this blog I said I would tell you guys the good and the bad; how I feel and what I’m doing.

I have a dear friend, Freddy Rodriguez, and he said something once that I carry to this day, “Man I ain’t feeling it.”

Man I ain’t feeling it today.

I didn’t get much sleep last night; everything aches and my stomach is doing cartwheels across the kitchen.

What’s more, I have to go in to the cancer center today for another chemo treatment. I wasn’t expecting this one; I had it set for tomorrow. I’ll have to sit there in the center for at least five and half hours. Drip, drip, drip goes the chemo.

Before that I have to go to another doctor at 8 a.m. and get stitches removed from head; and before that Kate and I have to drop the car off at the dealers for new tires.

Fudgesicles man! What a drag.

I know I’ve been dealing with this for only two months and that there are plenty of people fighting with cancer for years, but I am so tired of feeling yucky. I guess it’s frustration.

My doctor says we are right on track with the treatment and my blood count numbers look good so far. It sure doesn’t feel that way. I’m pouring sweat and have a crushing headache.

I guess that’s it for now. I’m going to lie in my recliner and see if I can get some sleep before today starts.

Love to all,

Bill

Appointment today and feeling okay

Dear Friends and Fellow Blogerites:

As you know, my body -- this temple handed down by the Gods, sculpted in the fires of the um, er, ah Delaware Department of Labor, and crafted with keen sense of artistry and detail -- is supposed to turn on me as my chemistry changes from the chemotherapy. So far I’m okay; a little achy is all.

I don’t want to count too many chickens too soon, but fingers crossed, maybe it won’t get worse than this. That would be great.

Headed to the doctor today for a quick shot of chemo in my head. I have a little anxiety about that – not because they’re putting the chemo in my head, but the last time they had to jab my scalp about 30 times with needle trying to find the port for the Ommaya Reservoir.

If you remember, they installed this port thing a week or so ago to help distribute the chemo in my brain and through my spine to the lymphatic system. Anyway it turns out that accessing Ommaya is like putting the air pump and needle in a basketball or football. Unlike a basketball, the access port is beneath the skin so you either have to know where it is, or you have to go looking for it. Looking for it means feel for it, find it, and jab a needle into it to distribute the chemo.

My doc had to go looking for it last time.

The story goes kind of like this. After taking about unsuccessful15 jabs at it, my doctor called the surgeon who installed this thing and asked for help. The surgeon comes in to save the day and he too begins a jab and poke fest – with no luck.

After about 45 minutes of this the doctor says, “Well nothing we can do now. It’s too swollen. I guess we’ll try again tomorrow.”

I am a little angry after all this.

“Suppose we can’t get this thing to work?” I ask.

“Then we’ll have to go in and replace it,” he said. “But it would be a lot easier this time.”

Kind of stunned, I just grunt some type of assent and he leaves

The next morning the Physician’s Assistant who works for the surgeon stops by and she start fiddling with it.

“Well let’s get this thing in,” she says.

“Hold on a second,” I said. “This isn’t gong to be like Excalibur, where every person in a pair of scrubs comes by to see who the rightful King of doctors is by taking a poke at my head.”

“Listen, I’m here, I see it, and we get this done.”

Finally I relent and let her have at it – she gets one shot.

She takes the syringe, gently touches my scalp, and inserts the needle into the port as easy as can be.

It’s done. I told my doc to make sure we know where this PA is and to call if there is any problem at all.

When the surgeon came in I started giving the PA accolades and he took an attitude like “Well, I loosened the jar for her.”

That’s it for now.

Peace to all

Bill

Lat year's Blizzard. I'll get more current photos ASAP

A picture from Montana

No special reason for the photo. I just hadn't posted one in a while. On my way in from Eastern MT.

chilling

Friends:

I don’t have a whole heck of a lot to report today. This is day eight of the chemo and I am supposed to get a big drop in all my good chemistry and start feeling lousy. I actually feel pretty good, so I just might go back to bed.

I feel kind of like that guys waiting for the end of the world and it never came. If I can get off as Scott free as him, life’ll be dandy.

I guess that’s it today.

Love to all,

Bill

Potter Tossed Out of Hospital

Newark, Del. – Citing a breakdown in operations throughout the hospital, the Christiania Care Health system, announced it had sent one of its cancer patients home today in hopes of getting things back to normal.

“Having Bill Potter here was wonderful,” one administrator said on the condition of anonymity. “But he is just so damn smart and funny. It’s hard to get people back on track once they meet him.”

Potter, suffering from Burkitt’s Lymphoma, was released from the hospital at mid-day and is said to be resting comfortably in his Newark home.

“I never really meant any harm,” he said. “I was just chatting, joking, and helping the nurses and doctors with some of their casework.”

Although it turns out that Potter’s medical insights were superb, and his jokes better, the hospital just couldn’t have work come to a crawl waiting for his insight.

“It’s like having a superman among you,” said the same administrator. “With a resource like him, you tend want him to give everything a second approval.

“He wasn’t going to be here checking our work forever, so we had to make the move before he became too much of a crutch.”

Potter is expected back at the hospital in a couple of weeks for a second round of chemotherapy. Hospital administrators are considering brining him back in disguise of under the cover of darkness to avoid disruption.

In the interim, Bill can be reached at home at 302-738-3418 or at Lettice123@yahoo.com.

Lion Of A Man Takes Battle To Cancer

Lion Of A Man Takes Battle To Cancer

Self-described Manly Man Fights Children’s Cancer Strain

Newark, Del. – Bill Potter completed his first four-day block of chemotherapy treatment Sunday morning at Christiana Hospital at about 10 a.m. The block was the first step in what will eventually be a six to eight month slog for Mr. Potter to battle back from Burkitt’s Lymphoma, diagnosed about a month ago.

Even so, the first four-day block is significant, he said.

“This puts everything in motion,” Potter said. “It kind of sets the stage. The initial treatment – I’m told – kills both good cells and bad cells and that will likely make me feel lousy for a while, maybe seven to fourteen days.

“After that I should rebound and get feeling a bit better. At some point the process will start again.”

Generally speaking each block of chemo, feeling lousing, and recovering is part of a 21-day alternating cycle designed to aggressively knock the cancer on its heels.

The leaning forward approach to battling Burkitt’s, an extremely rare cancer in the United States, is needed because of the aggressive nature of the disease and how early it was found in Potter.

“Lucky, lucky, lucky,” he said. “This thing was discovered in stage two, it is usually discovered much later. We kick this thing in the tail now, while it is still young; this could all just be an unpleasant bump in the road.”

Potter is somewhat anxious about the feeling lousy, which is traditionally the next step.

“Simply put, I’m a cry baby,” He said. “My hair might fall out – which is no big deal really – and I’ll do some puking, and feel run down and be susceptible to other people’s germs.

“I’m not looking forward to that. The only thing that makes that better is I may lose all those patches of hair that show up in odd places when you turn 50.”

Bill Potter can be reached at 302-733-6229 or Lettice123@yahoo.com

Secret Sharer

Secret Sharer

Since Cancer and Chemo are beginnings of a sort, I wracked my memory for the most beautiful words of beginning and uncertainty I could find. It is beyond my ability to describe those things – But not for Joseph Conrad. The passage below is from his book the Secret Sharer. I know it’s a bit “out there" as far as a cancer blog goes, but what the hell it’s Sunday morning.

On my right hand there were lines of fishing stakes resembling a mysterious system of half-submerged bamboo fences, incomprehensible in its division of the domain of tropical fishes, and crazy of aspect as if abandoned forever by some nomad tribe of fishermen now gone to the other end of the ocean; for there was no sign of human habitation as far as the eye could reach. To the left a group of barren islets, suggesting ruins of stone walls, towers, and blockhouses, had its foundations set in a blue sea that itself looked solid, so still and stable did it lie below my feet; even the track of light from the westering sun shone smoothly, without that animated glitter which tells of an imperceptible ripple.

And when I turned my head to take a parting glance at the tug which had just left us anchored outside the bar, I saw the straight line of the flat shore joined to the stable sea, edge to edge, with a perfect and unmarked closeness, in one leveled floor half brown, half blue under the enormous dome of the sky.

Corresponding in their insignificance to the islets of the sea, two small clumps of trees, one on each side of the only fault in the impeccable joint, marked the mouth of the river Meinam we had just left on the first preparatory stage of our homeward journey; and, far back on the inland level, a larger and loftier mass, the grove surrounding the great Paknam pagoda, was the only thing on which the eye could rest from the vain task of exploring the monotonous sweep of the horizon.

Here and there gleams as of a few scattered pieces of silver marked the windings of the great river; and on the nearest of them, just within the bar, the tug steaming right into the land became lost to my sight, hull and funnel and masts, as though the impassive earth had swallowed her up without an effort, without a tremor. My eye followed the light cloud of her smoke, now here, now there, above the plain, according to the devious curves of the stream, but always fainter and farther away, till I lost it at last behind the miter-shaped hill of the great pagoda.

And then I was left alone with my ship, anchored at the head

of the Gulf of Siam.

Nurses -- Where do they come from?

She held my hand as the needle went into my scalp. The pain caught me by surprise. I involuntarily winced and squeezed down on her hand pinching the her fingers around her wedding ring.

She didn’t wince at first.

The needle went in again and this time I squeezed her slender hand harder and this time she had to let go.

She stopped, took a step back, shook her hand, and approached the bed again and grabbed my hand again, expecting more of the same. She got it about ten times more.

Jab, squeeze, and wince it went on for about a half an hour.

She wasn’t the first either.

Earlier in the evening another woman, much younger than the second, softly and reassuringly stroked my arm and grabbed my hand trying to usher me through what should have been and easy insertion of a needle into an Ommaya reservoir. That one too didn’t go so well, but the nurses were more powerful than any anesthetic or pain killer.

Nurses -- I don’t know what they do at home, if they’re different than anybody else, or if they they’re just like the rest of us. But, here at the cancer ward they seem an odd combination of science and compassionate artistry; knowing what to say or do at disparate critical times.

A couple of days earlier, when I went through the chills and Rigors and all, it was three nurses and the doctor who moved with lightning speed to pull it all together. The nurses got drugs, offered encouragement, and told me what was going on how long I could expect to the stuff to last.

Later that evening a wily veteran nurse stood by me all night and walked me through my first chemo session – what to expect, what not to expect, why we were driving forward instead of taking a break even though we had the Rigors episode.

It wasn’t as if she sat next to me like a mentor.

The blue light from my roommate’s TV silhouetted her against the curtain dividing the two patient bed areas. She didn’t look at me directly, but stood there ruminating over dials read outs she’d seen a hundred times before.

I was scared and told her.

She explained what was going on and spoke with such confidence about the next steps that I was convinced it would be okay. As she upped the doses on the drug that caused the Rigors in the first place she kept saying, “You’re body’s used to it now. The worst is over. We are way behind and we need to keep going.

“If you get the chills, we’ll get three of us, wrap you in blankets, climb on top of you, and hold you down until this is over,” she said jokingly (I think).

She was right – of course. I was fine.

I choose to believe she stayed by me all night, although I really know she went to see other patients it still seemed like she never left my side. At 3 a.m. when my first chemo was over I was spent, soaked in sweat, and while I rested we talked.

I drifted in and out and at about 5 a.m. she went and scrounged up some of those little plastic individual servings of coffee that go in a fancy coffee maker and we had coffee and talked about our first cars – both Ford Falcons.

The point is I guess is that she and the others didn’t have to hold my hand, get their fingers crushed, or coax a 53 year-old cry baby across his first chemo finish line. But they did.

Nurses – Where the hell do they come from? You got me, but I’m glad somebody’s making ‘em.

Peace,

Bill

Great news!

It turns out my cancer is stage 2 and not stage 4 like we feared, I'm dancing a jig

Bill Photos

 This is a picture of the most handsome man in the cancer ward.  Thank God Chip Slattery isn't here or no one would notice me.














 This is me minutes after completing my very first chemo treatment at 0300 May 19th.

This is the big horseshoe scar I earned. Pretty cool huh. The doc wanted to camouflage the incision along my hairline. When my hair grows back I'll look nifty again.

Shake rattle and roll everybody.

It’s 2055 and all the families are getting their last hugs and kisses before going home. Even though visiting hours are supposed to end at 2030, that’s really more of a guideline than a strict rule.

Mom’s and daughters seemed dressed to the nines in floral prints dresses, beige skirts, and fashionable conservative slacks to visit their husbands, fathers and grandfathers.

Many of the conversations are clear, direct, and unambiguous. “Do what the doctor’s say and let’s get you home. We need you.”

Fathers, brothers, and sons take the chastisement. They offer no excuses, and commit to working harder and cooperating more the next day.

“You’re right,” one man says.

6B is the cancer ward. Every minute there is a success and a failure; a glimmer of hope and a setback; a future developing or a roadblock appearing so huge it is daunting.

It’s all here.

At about 5 pm I began my chemo and immediately had a setback. It all started with a chill – just a little too much air conditioning I thought. The chills spread from my shoulders to my legs with each second bring on more violent mini-spasms. With in seconds I was in a full-blown shaking fit like if I had suffered hypothermia. It was uncontrollable shaking from head to toe.

My doctor, who happened to be there, ordered Demerol and turned off the chemo. Three nurses and my doctor worked to get more Demerol in me. Soon by bits and pieces the shaking stopped, leaving me depleted.

I thought that would be the end of it all for Wednesday night – it wasn’t. The doctor’s and nurses decided that it was best to let me rest and then start again immediately.

I was especially skeptical. My thinking was we’ve already had one shaking fit, called rigors, so why tempt fate and do it again. There view was not to waste time and to take advantaged of the chemo already in my body and accept risk. Their view was that my body had been calmed with Demerol and that my body was used to the drug now.

I told them I was skeptical, but was reassured and I deferred to their recommendation. It is now 2130 and they steadily increased my chemo drip and I haven’t any shaking fits.  I guess we’ll see.

Chemo is not an 8 to 5 operation. It goes on 24/7. There are drugs that have to be matched and complemented to get the best result. The drugs have to be matched and timed together.

That means there is no sleep for the chemo patient.

Wednesday 18 May 2011

What to report? What to report? HMMMMM.

Not much going on here. Oh I almost forgot. It’s 1357 on Wednesday and I started chemo. It’s all been quite a deal so far.

The problem with writing this blog is that so much of the language I am being immersed in is so foreign to non-cancer folks (be thankful) that it is hard to keep things going and not use terms, which will slow down the post.

Yesterday, I had an Ommaya reservoir installed in my head. This will explain it pretty well http://www.atlantabrainandspine.com/subject.php?pn=animation-ommaya. The good news is I have the reservoir. The bad news is I have a God-awful headache. On my follow-up instructions it says that I should report any headaches to my doctor. I have to think if someone drills a hole in your head and emplaces a foreign body under your scalp, somebody’s getting a headache. You would think the instructions would say something about reporting if you DON’T get a headache.

From all the horror stories I’ve heard about chemo, I am of course apprehensive. It’s always been true though, that things are never as good or as bad as first reported. So I am optimistic that I will be the exception to the stories.  I guess we’ll see.

15 minutes in and I still feel good – except for this headache.

I guess that’s it for now.

By the way my phone at the hospital is 302-733-6229

My email is lettice123@yahoo.com.

See ya soon. Pictures tomorrow.

Bill

Mountain Passes, Hydras, and Robert Frost

This is a picture of my dog and I atop McDonald Pass in Montana. McDonald Pass separates Helena from some smaller towns en route to Missoula. It has an elevation of 6300 feet. Most passes seem to connect smaller towns with larger cities.

I kind of feel today like I’m on a pass. I feel, as though I’m somewhere in the middle of something I just can’t put my finger on. Remember that great Neil Diamond song “I am … I said?” It has those great metaphoric lines:

Well, I'm New York City born and raised

But nowadays, I'm lost between two shores

As write this I think I have come to the nub of it all. 

I am atop the pass having just left the safety of my small town where I was safe and healthy. I know what is what like where I was and if I wanted to look back I could see the indistinct outline of before. But from the top of this pass looking forward I can see the equally indistinct city as laid out in front of me in a valley of unknown. I get the sense of the totality of the valley, without actually knowing any of the individuality of the city. Even so, I must move forward to the risk and hope; I can only stay on the pass for a moment.

Blinding Flash of the Obvious!

I have it, I have it! This is what Frost was talking about in his poem. I never considered it this way.

Stopping by Woods on a Snowy Evening

BY ROBERT FROST

Whose woods these are I think I know.   

His house is in the village though;   

He will not see me stopping here   

To watch his woods fill up with snow.   

My little horse must think it queer   

To stop without a farmhouse near   

Between the woods and frozen lake   

The darkest evening of the year.   

He gives his harness bells a shake   

To ask if there is some mistake.   

The only other sound’s the sweep   

Of easy wind and downy flake.   

The woods are lovely, dark and deep.   

But I have promises to keep,   

And miles to go before I sleep,   

And miles to go before I sleep.

Other thoughts

I am closing the loop on several issues; all left brain stuff.

• 1.     Need to make an appointment with my primary care doc to make sure we have a good communications process in place before I start chemo. Like in the Army, communications is the key to winning. I have some anxiety concerning the commo between primary care doctors, insurance, and specialists. They all seem so disparate.
• 2.     I have to run up to the office and sit with the HR ladies and clarify the rules for my short-term disability. Again another commo challenge. Who asks for extensions, etc?
• 3.     I need to stop by my boss’s office and update her on the plan and how long I’ll be out of action.
• 4.     I have to go to my oncologist’s office and get my pre-chemo evaluation. I am not quite sure what this means, but I think they tell me how the schedule for the next six months will go.

I know these are important issues, but somehow they seem to only hit the periphery of what’s going on. Oh well. I wonder if all this is an attempt by me to gain control over a process that seems like a Hydra, with each head having its own focus and priority. The problem of course is there is little integration between doctor, insurers, and employers.

Stream of consciousness alert: I wonder if there is business opportunity for a professional service, which integrates all the pieces and parts for sick people? hmmmmmm

But right brain stuff has to count too and I am wrestling with the creative; philosophical; symbols and images component of it all. Is there even a right brain component, or is it all science? I guess the right brain stuff starts with an expectation of success, or more accurately, a belief that I will ultimately win.

Excuse the scattered nature of this post, but the pass metaphor and the Robert Frost thing took hold of me.

Peace,

Bill

I’m Back

I’m Back

After about 48 hours of serious thumb sucking (say that ten times fast), I’m back and ready to go.

Since I will be I the hospital for quite some time I went to Boscov’s (a local department store for my non-Delaware friends) and bought some PJs and Crocs.

I may never take the Crocs off my feet. At first I thought they were for cosmic earth children and only slightly better than earth shoes (remember those?). Well, this is yet another time when my style prejudices would have let me down. I love these things and they’ll be perfect for my hospital jaunts.

Since I’ll be in the hospital for ten days starting Tuesday, I’m debating which guitar to bring with me. I’m leaning toward my Stratocaster cause I can plug it into my Mac and play it softly and not bother the rest of the cancer patients. If I bring an acoustic guitar it might be too loud and you all know how considerate of people when volume is concerned. That is why I talk so softly.

I guess that’s it for now. More tomorrow.

This post is going to be depressing and full of foul language.

Yesterday was an avalanche of bad news, unattractive options, and a caution to remember the big picture.

I went to get my bone marrow test yesterday – It turned out having a needle stuck in my hip and having bone marrow drawn would be the highlight of the day.

I get to the oncology office and have the obligatory blood work, blood pressure, temperature and other vitals sign stuff completed. As Kate and I sat there, I was wondering if my doc would give me an update or whether we would just do the bone marrow draw and call me back for another follow on appointment to talk options.

I needn’t have worried – there would be no shortage of update.

So this is what he/they told me.

I have a Burkitt’s or Burkitt’s-type lymphoma, which will require a highly aggressive course of treatment to cure.

This highly aggressive course involves/is a chemo treatment called R Hyper CVAD. It will require me to go to the hospital 8 times, for a five-day stay every 21 days. That’s the good news. Actually, the good news is I will probably be cured

My first stay begins Tuesday 17 May 11. I have to have a chemo port installed and I also have to get a port installed in my skull so they can apply a special chemo elixir to my brain.

I have tried to come up with the right phrase to describe it all and F@CK -- in all its permutations -- is the only adequate word that encapsulates the irony, frustration, and disbelief of it all. As I write this I am muttering F@CK to myself. 

Anyway, I had every belief that I’d go to my appointment and the doc would say, “Good news, the PET scan indicates there are no other traces of cancer.” That’s not what happened.

Instead I was told that there was a little left in my abdomen, maybe some in my sinuses, and we’d have to check the bone marrow to see where we were on the continuum of stages. Right now I am somewhere between stage II and IV.

The good news for medical prognostication is that my three performance data (probable success criteria) are excellent:

            I am only 53

            I am in excellent physical shape (cancer not withstanding)

            My good cholesterol is apparently perfect (go figure)

So anyway, I’m off to the hospital Tuesday and this first stay will be 8 to 10 days because of the port installations. Jeepers!

So I guess we’ll see.

Peace, 

Bill

This is a picture of Kate and I dancing. It has nothing to do with the post. I just love dancing with her. 

You guys are so lucky.

You guys are so lucky.

If I could figure out how to post an MP3 to my blog I would bombard you with my song stylings and drive you from music forever. But alas I can’t figure out how to do it just yet – but I will.

My friend Alec Sullivan – actually my friend’s daughter’s boyfriend – said I will probably have to make a video to post it to my blog. If that happens – you guys are really in deep doo doo. I’ll do it shirtless and highlight my scar. You’ll probably all go blind.

About my scar. I wanted the surgeon to make mine all jagged and nasty so it would like I was in a knife fight. He wouldn’t do it. Then I said, “Can you give me a scar across my cheek so I look like a Prussian General?” He looked at me like I was crazy. Geez some people can’t tell when a joke is being delivered. I would like to look like “Fearless Leader” from the Bullwinkle Show, but it is not to be.

Not a whole lot to report today; I’m just kind of relaxing. I have to run up to Rite Aide later and get some drugs for my bone marrow thingy tomorrow. After that we’ll get down to brass tacks.

I’m not sure why brass tacks should be more serious than any other type of metal fastener, but getting down to brass tacks is apparently way more serious than getting down to steel staples. Ah language – I love it.

Peace to all,

Bill 

Quite a day yesterday.

How’s everyone?

I went to get my scan yesterday. I guess is went well, but I can’t have any caffeine until 12 pm today as a result. At 1201 I’m having a big cup of coffee. I love coffee. The whole PET Scan process was very lonely.

When you first get to the Graham Center, they make you fill out paperwork with info that’s probably already in the computer system. Everyone has a process.

I know this is stupid, but I was taken aback at how sick everyone was. I guess they look at me the same way … who knows?

The call your name and you go back to this small room with a locker, change into your PJs or a hospital gown. I chose the blue elephant PJs. Then they take you to this other room where there is a single hospital phlebotomy chair and they hook you up to an IV and with machine gun rat-a-tat speed tell you the whole sequence of events for the visit. If you can keep up it’s good info, if you can’t it really doesn’t matter.

After they check your blood sugar and kidney functions they call in the radiation lady. Okay a couple of points, apparently cancer looks high concentrations of sugar in your body once all the dies and contrast chemicals hit it. That’s why the blood sugar thing is important and your kidneys have to process all the dyes; that’s why the kidney function thing is important.

Anyway the radiation nurse comes in carrying a small, gray, heavy lead box that looks like if could hold a small loaf of bread. Inside is a gray syringe containing radioactive goop they pump in the IV. It doesn’t hurt or anything, but it all seems very ominous and science fiction like. After the goop is in your IV you have to sit for about an hour so the radiation dye can go through your entire body.

After an hour they take you into the scan room. 

It looks like the picture I stole this morning from http://images.wikia.com/psychology/images/b/b8/ECAT-Exact-HR--PET-Scanner.jpg. Even though I’ve lost some weight, at 225, I am still a pretty big guy so I was skeptical that I’d fit in this thing. Not to worry.

When I get to the scan room they lay me out with my arms above my head on the little table leading into the machine. Then they wrapped me up in toasty warm hospital blankets – it was actually pretty nice. For the next 40 minutes or so I go in and out the scanner holding my breath, not holding my breath, and having contrast dye pumped in at different time. The contrast dye, by the way, makes you feel warm inside; it’s not unpleasant.

The whole thing took about two hours and I was able to drive home. BTW it’s the first time I’ve been able to drive in two weeks. They will marry the results of this with the bone marrow test I have set for Friday. That will tell the doctors and I what’s what and the course of treatment will be locked in at that point.

It’s most likely a flavor of chemo next week or so.

PET

Going to get my self a PET scan to day. I’m not sure why the want to scan one of my pets, but what the hell they’re the doctors. I’m thinking I’ll take my dog Buzz. What? Oh, never mind. Apparently a PET scan isn’t for pets PET is an acronym for Positron Emission Tomography (PET).

Here is some info I stole from http://www.petscaninfo.com/zportal/portals/pat/cancer this morning. Positron Emission Tomography (PET) and Computed Tomography (CT) imaging have become essential diagnostic tools physicians use to reveal the presence and severity of cancers. PET/CT imaging helps physicians detect cancer, evaluate the extent of disease, select the most appropriate treatments, determine if the therapy is working, and detect any recurrent tumors.

Before a PET/CT scan, the patient receives an intravenous injection of radioactive glucose. Many cancer cells are highly metabolic and rapidly synthesize the radioactive glucose. Information regarding the location of abnormal levels of radioactive glucose obtained from the whole-body PET/CT scan helps physicians effectively pinpoint the source of cancer and detect whether cancer is isolated to one specific area.

So anyway, I’m supposed to lie down and be still for about an hour as they move me through this giant donut shaped scanner. In and out and in and out. I’m not claustrophobic, but I am not sure I can sit still for an hour. The good news is I get wear pajamas to a doctor’s appointment. One must find the good in these things.

I’m actually pretty curious about this. I suspect they won’t find much.

My plan is to go to Wawa afterward and get a roast beef sandwich. After all, I have to keep building myself up nutritionally speaking – I’m pretty sure Wawa is on the American Cancer Society’s list of approved food dispensaries. 

That's it for now

Love to all

General nonaligned thoughts

This is a stream of consciousness kind of piece.

Well, a new week’s beginning and I have a lot to do. Got a few appointments. Going to a cancer support group Tuesday night at the Delaware Wellness Community. I’ll probably get a call from one of the Wellness Staff later on today—a social worker that will give me an attitude check. Probably not a bad idea.

I’ve been kind of selfishly angry the past couple of days. You know, “why me?” kind of stuff. I know I should be thankful for the love everyone has shown me, but sometimes it’s just hard to have an attitude of gratitude amid conversations of chemo-ports and living wills.

I am going a bit cabin crazy. There isn’t a whole lot I can do about it. I can begin driving this week and maybe run an errand or two, but I am still kind of weak and run out of gas fairly quickly. My abdomen seems kind of sore too -- I guess that’s from having a major operation fewer than three weeks ago. I have been saying the Rosary a lot lately. I guess the old saying about atheist in foxholes applies to cancer patients as well.

I still can’t picture myself as a cancer patient/survivor. That’s the kind of thing that happens to the other guy.

Anyway I need to get back on track with some positive mojo.

Oh, I almost forgot -- I’m writing a blues song about lymphatic cancer and will record it to my computer pretty soon and put it on the blog. Since I can’t sing and my guitar playing is spotty at best it should make your ears bleed.

I guess medical marijuana in Delaware is getting approved. The timing couldn’t be better. I wonder if they issue Grateful Dead albums with every prescription. If I start wearing tie-dyed hospital gowns, you’ll know something is afoot.

That’s it for today, more positive tomorrow.

Love to all,

Bill 

This blows.

My eloquence escapes me today. Simply, this blows.

I had a tough day yesterday – not physically tough, but psychically tough. I took a step back and measured the road ahead and it seems so long, tough, and miserable that I was overwhelmed for an hour or two. It’s not like a have a whole lot of choices – I have to fight, but Jeepers! This is going to be harder than US Army Officer Candidate School.

What really sucks is, in about two weeks when this chemo stuff starts I will look back at this as the good old days. What a mess!

I’ll be back in better attitude tomorrow. Today I’m sucking my thumb and feeling sorry for myself.

Bill

next steps

Okay boys and girls we finally got some info about steps forward for your favorite soon-to-be cancer survivor. I know most of you have put your entire lives on hold pending info about me – and that’s how it should be frankly.

As my boss, Gwen Jones, will tell you, in the end it’s all about Bill.

Since my last update I went to the oncologist at the Helen F. Graham Center. It was actually kind of weird. The waiting area is an attempt at a soothing beige, with expensive faux cherry furniture and pretty comfortable chairs. The clickety – slam of security doors separating the waiting area from doctors and treatment facilities kind of ruin the ambience.

I for one would prefer a change in the decor from soothing to openly aggressive. I don’t know, a “Sgt. Rock” kind of doctor holding a big IV bag like it were an M-16 would inspire more confidence. I don’t want to negotiate with this lymphoma – I want to kick its ass. Some poster demonstrating resolve would be way better. Really openly hostile art is the way to go. Maybe in my next career I’ll become a cancer waiting room interior decorator.

Again let’s stay focused. It is about me after all.

Kate took me to the oncologist and they felt me up, probed me, took blood, and made me wear one of those God awful maroon hospital gowns (camouflage would be better). At one point the doctor gave Kate and I presentation using a lot of neighborhood and housing metaphors about non-Hodgkin’s Lymphoma and how the body’s different neighborhoods interact. I dug the info, but for a while wasn’t sure if I had to sell my house.

Here’s the deal. Apparently I’m gonna live. But it’s going to take a bit of oomph to do it. They have to map the inner me via a scan and a bone marrow thing. The scan will just play against my fidgety nature while the bone marrow thing requires them to drill into my hip to get some marrow goop to analyze. The scan will be early next week and bone marrow mess will be next Friday. Poop!

Because of my superb physical conditioning, and interplanetary heritage they have to send out for Kryptonite scalpels. Those should arrive just before the 20^thwhen I have to some outpatient have surgery to get a “port” installed for the chemotherapy. After that it’s all blue skies -- a little chemo, a little puking, and a whole lot getting better.

Once I have the chemo going and such I will go back to work and make the lives of DOL folks better.

Important Oncology Questions

• Well, I’m getting ready to go to the oncologist for the first time at 1000. I have some questions.

1.     Will the chemotherapy cause my hair to fall out? If so does that include those mysterious patches of hair that show up on my ears from time-to-time? It only seems fair that it should. What about the hairs in my nostrils; they can sometimes get Rapunzel long.
2    Can I do this on weekends? I’d really rather have my weeks to myself. I mean, since this is a stinky duty, can I make allowances for chilling out?
3.     Can this be done on the side of the bay with a fishing rod in my hand? If I just have to sit there and take poison, why do it in a hospital. Why in college I poisoned myself most weekends.
4.     Do I get to wear cool cancer survivor hats --  I bet the breast cancer ladies have a monopoly on hip cancer gear.
5.     Is there any chance I can lose more weight. I’ve already dropped 25 pounds and my goal for the summer was 35 pounds. Although I meant to diet instead of vomit, I must admit having it taken out of my willpower-less hands is somewhat convenient. This is the first time I’ve ever caught something that has a side effect I appreciate.
6.     Since Burkitt’s Lymphoma usually affects small African children, is there something my mother forgot to mention about my father … hmmmm.

Love to all

Bill

Enormity and Such

Enormity and Such

Dear Prudence is playing in the background. The irony of the moment is not lost on me. I used to listen to the White Album in college, before I knew how hard it can all be.

“Look around, ‘round, ‘round,” Lennon sings. “Like a child.”

And that brings me to today. As I greeted “the brand new day,” I was a bit naïve or overly optimistic – pick one.

I visited my primary care doctor, whose demeanor was of such gravity that it focused the whole Burkitt’s Lymphoma conversation.

“Burkitt’s requires aggressive chemotherapy,” she said.

“I’ve been reading about it,” I said.

I’m not sure exactly what aggressive chemo means, but it sounds uninviting. The small amount of research I’ve done suggests it’s an inpatient therapy with doctors dumping cell-killing toxins in my system to get the cancer. The only problem is that chemo kills good stuff too. There doesn’t appear to be a “wait and see” option.

My doc said she would get me an appointment with an oncologist “sooner, rather than later” so we can get started.

As I sat there listening to her, it became apparent this is a serious life and death thing, with winners and losers. Luckily for me I never lose. I am hoping we can get going soon so I don’t have to miss too much work.

It figures though -- I'd get a disease common to children. There is a certain unity in that.

 Guess that’s it.

Peace,

Bill

Staples, Steaks, and Rare Lymphomas

It’s true; nothing is ever simple – at least for me. I went to the doctor today to get my sutures (aka staples) removed. I went in, lied down and the doc took this tiny tool, which is cross between a pair of pliers and a pair of scissors and pulled the couple of dozens staples in about ten minutes.

When he was done I figured it was good time to ask some questions.

“When we last talked you said the biopsy still needed to be completed, but it looked like a Lymphoma. Anything new?” I asked.

“It is a Lymphoma, specifically it’s a Burkitt’s Lymphoma,” he said. I don’t see too any of those in a year.

No kidding. I discovered later that Burkitt’s lymphoma is a rare non-Hodgkin’s Lymphoma usually contracted by children in Equatorial Africa. Fewer than 300 cases are reported annually in the United States. The majority of those cases are in men over 40. It is usually highly curable, with heavy doses of chemotherapy.

The surgeon gave me a referral to a lymphoma doc who has experience in these – how much experience a person can have in something that only occurs 300 times annually in a population of 311,000,000 is of course curious.

Anyway, if there was any good news the doc said I need to increase the red meat intake in my diet to increase my iron and therefore my energy.

I am a bit anxiety ridden at the moment, as I am not sure what happens next. Do I have chemo? Will it be soon? In patient/outpatient? Will my doctors take a wait and see approach since there is no longer a mass (surgery remember)? When can I go back to work?

I’ll report more tomorrow.

Peace to all,

Bill