I always wanted to be a tumbler.  You know, one of those people who launch themselves into the air and whirl around, doing dangerous things you just know would get them yelled at by their mothers.  But I always figured I would land on my head and hurt myself.

Well, I was right.  About the head-banging part, at least. 

Tuesday I was up early—at about 7AM—and got some coffee, which I took to my little easy chair.  Then I dropped something on the floor under my chair.  Still standing, I bent down to look for whatever I had dropped, and the next thing I knew I had lost my balance and was racing across the floor backwards, arms flailing, trying to keep from falling.  I crashed into my desk, a children’s rocker, my two canes, and God knows what else, making a lot of noise and landing with a loud, humiliating butt-thump.  Fortunately Annelisa was up and in the kitchen and came flying up the stairs.  She didn’t say a word, just knelt beside me on the floor and put her arms around me and held me while I was getting back my bearings.

Then she started cleaning me up: I apparently hit my head on the corner of my desk and got a two-inch gash in my scalp.  I probably could have used a couple of stitches, but the procedure, as I understand it, is that I’m to call hospice when something like this happens.  My hospice nurse was due here later in the day, and Annelisa got the bleeding stopped pretty quickly, so we decided to wait.  Biyana, the nurse, came around mid-afternoon, cleaned me up a little more, and put on three butterfly bandages.  No problems since, and she came back yesterday afternoon to check on me.  I’m pleased to announce that all is well, and I’m just as hard-headed as Annelisa tells me I am.

But getting yelled at by your mother is nothing compared to what Annelisa can do.  I’m no longer allowed to do anything at all without an attendant, except to sit in my chair.

But every cloud has a silver lining.  I’m not allowed to take a shower without an attendant either.

Lest you think I harbor a bad attitude about doctors, let me disabuse you.  It’s just some of them.

My general practitioner is a good doctor and a fine man.  He’s the one who called me at the hospital when I was admitted for cancer and pneumonia 18 months ago.  He called me, even though he was away on vacation at the time.  He called me, even though he had to go out and buy a phone card so he could make the call.

He is Dr. Daniel Goldsmith. Or, to me, Dan Goldsmith.  He’s a caring man, smart, funny, and sincere.  During the time I was doing chemo and radiation, I didn’t see much of him.  But when I signed up for hospice, I was told that the physician team leader for me would be taken from a pool of doctors who serve as team leaders.  Or, I was told, they would ask my General Practitioner.  I asked them to talk to him about it, and he told them he wanted to be the team leader for me.

We went to see him last week.  It was like a reunion with old friends, because everybody in his office knows me.  Comfort people are just as important as comfort food.

Sorry for the inattention.  We’ve had a string of house-guests, and my son, the last one on the visitor list, is here now.  He leaves this evening.  With any luck, I’ll have something to say tomorrow.  Meanwhile, I’m enjoying the visit, except for the part yesterday, when Annelisa brought him into the bathroom to pull me out of the bathtub. 

But I certainly pulled him out of the bathtub plenty of times, didn’t I?

In response to one of my recent posts, one reader expressed an interest in knowing more about my mother. One of my sisters suggested I post this, which I wrote when Mom died.  It’s really about both of our parents.

Shadows

My father had a giant shadow.  It’s logical: he was a big man and a man his size would have a big shadow.  When I think about his shadow, however, it isn’t his physical shadow that I remember.  In fact, I can’t remember ever thinking about the shadow he made in bright sunlight, although there’s always sunlight in my memories of him.  Instead, when I think about my father’s shadow, I think about the shadow he cast over people who knew him. 

A friend once told me that when you came to know my father you instinctively knew he had an innate sense of right and wrong.  My friend grew up without a father; he might simply have been impressed by mine.  After all, my father was an impressive man.  As a youth, he taught himself music and learned to play the clarinet well enough to give lessons to others.  He became a Boy Scout in a tiny town that didn’t have a Boy Scout troop, doing all his merit badges without anybody to coach or guide him.  In his first year at Purdue he walked onto the football field and earned himself a position at tackle.  In the end he walked off the football field, foregoing his favorite sport because it didn’t allow him enough time to study.  As a young adult, when World War II was in full force, he enlisted in the U. S. Navy.  He was the sole surviving son of a sole surviving son, and in those days he could have stayed at home.  He enlisted anyway, volunteering for service in submarines, only to be told he was too tall.  I’m sure this was a disappointment for him.

As I grew up my father became a Boy Scout leader and guided and goaded me into becoming an Eagle Scout.  He continued to volunteer for this organization, even after I grew up and moved away to start my own life.  He received awards for his leadership in the Boy Scouts of America. 

He received awards for other work he did as well, much of it the kind of work it’s hard to get people to volunteer to do.  Most of these awards were little more than a simple “thank you, Cecil.”  Nevertheless, when people needed to be counseled, he was often the one asked to counsel them.  When a person was in trouble, he was the one who stood up and helped.  When a person needed a friend, he was ready.  When a volunteer was needed, his hand was already in the air.

My father was a gentle but dominating force in my life as I was growing up, and I think he had the same effect on my two sisters.  Each of us had problems and made mistakes in our youth, and each of us was blessed to have standing behind us a man who loved us and supported us, a man who was always pointing the right direction.

Indeed, his shadow was huge.  It covered my entire world, cloaking and protecting me.  I wasn’t yet forty when he died, and his shadow was still there in the days and months after he died.  It’s still there today.

Concealed in my father’s shadow were my mother and her own shadow.  What was her shadow like in those days?  I can’t say, but I often wonder about the private conversations between my parents.  How much of him did she create?  Did she help him decide directions to take?  Did she venture opinions that helped him form his own?  Did she separate right from wrong for him when he was having trouble doing it himself? 

I don’t know the answers to these questions.  I will never know.  I can only speculate.  I can only remember some of the things that happened and try to draw a conclusion from these memories.

When my sisters and I began bringing forth grandchildren for my parents, they both seemed to be pleased and fulfilled.  When these grandchildren became teens, my parents made a secret pact with each of them.  Any time, whatever the problem or its cause, the grandchildren could go to their grandparents and ask for and receive help.  The parents, my sisters and I, would never be told—and indeed we never were.  All we know of those discussions today is what our children have chosen to share with us.  I have a hunch this pact was my mother’s idea.

As young adults and parents, we were permitted to make the mistakes we made without ever knowing of any disapproval from our parents.  I am certain it was our mother who made sure this happened, and I think it may have been difficult for her to teach our father to let us go our own directions.  Our father was quick to anger and quick to act, and today I can see how our mother’s quiet acceptance of us and our imperfections must have tempered his instinctive urges to scold us and counsel us and continue to lead us.

Her influence on him was powerful.  I would not—could not—have reached this conclusion while my father was still alive.  His shadow masked her strength.

My mother lived for a little more than eighteen years after my father died, and it wasn’t until after his death that her own shadow emerged.  Eighteen years is a lifetime to many people; it was nearly one third of my own life.  In some ways those years were a new lifetime—unbidden, to be certain—for my mother. 

Her shadow bloomed during those eighteen years.  We discovered another person who had an instinct about what is right.  We discovered another strong person, one who was fully capable of making her own way, one who was fiercely independent, one who revealed wisdom that I, for one, had never taken into account.  We discovered a highly principled person who had to have been a significant part of many of the elements of the relationship my sisters and I had with our parents.

It’s unfortunate that our mother readily accepted a place in this man’s shadow, although he was a wonderful remarkable man and I know she was very happy there.  However, for me at least, his shadow hid hers from me.  It’s also unfortunate that she had to spend the final fourth of her life without him.  However, those were the years when I found out who this woman really was, when I found out that she had a giant shadow as well.  She simply shaped it, fitting her shadow inside the edges of his. 

Today, as it always was, there are two shadows present, still just as strong—but now the shadows are side by side.

Leroy Sievers has died.  If you’re a regular reader of my blog, you may remember that he has maintained a blog about his own cancer.  I’ve been a regular reader for at least a year.  Well, he died yesterday.

Something nice happened this morning.  Toweling down after my shower, I discovered that the hair on my chest and stomach has begun to grow again.  It’s amazing what can happen when you’re not paying attention.  That chemotherapy can’t keep me down for long.  Now all I need to do is to get rid of that fatigue.

In the nearly eighteen months since I started writing this blog, I think the most frequent comments have been about my outlook, or my courage.  I think the two are the same. 

When I was in college I never crammed for exams.  At Purdue at the time, we didn’t have finals.  (Remember, this was during the Early Dark Ages.)  Instead we had four one-hour exams during the semester.  I had a rule that I would never study late into the depths of the night, exhausting myself emotionally before the exam even started.  Unlike my classmates, I went to bed at midnight, assuming that a sharper mind was better empty than a mind dulled by exhaustion from being force-fed all night.  My attitude was that if I hadn’t kept up with my studies well enough, I would get the grade I deserved.  This helped me to overcome my intense fear of exams, and it wasn’t a bit uncommon for me to sail into the classroom on exam day as if I were going for a hamburger.  Any “cramming” was contained in the fact that it was my habit to study all night Saturday nights.  In other words, I crammed every week.

I think this experience helped me develop an attitude about choices: You are responsible for the choices you make, and usually you get what you deserve.  There’s no reason to whine about it, even if the outcome looks like an innocent mistake or an unfair break.  I had to “stand up like a man and take what’s coming to me.” 

The game might be crooked, but it’s the only game in town.  As my mother would say, “Deal with it, Jay.”

I decided to take a day off yesterday.  What the heck, I thought.  It’s a weekend anyway.  So, I did nothing.  Nothing.  I didn’t start my email program, I didn’t get dressed until I was good and ready.  You see, it was Saturday, after all.  Even cancer patients get to have a weekend.

You see, I went off track.  It wasn’t Saturday.  So I had to do the whole day off thing again today, which really is Saturday. 

I hate it when I have to do something over because I got it wrong the first time.  Bun if you decide to do something, you should do it right.

I have something I’ve been wanting to write about.  Yesterday I produced a first draft, but I wasn’t entirely satisfied with it.  Last evening I was even more dissatisfied.  This morning I looked at it again, and decided it was complete and utter junk.  I wanted to throw it away.

In my writing career, such as it was, I learned that first drafts always suck, so I’m going to allow some time for my subconscious to figure out what to do with this thing.

Meanwhile we’re still being overwhelmed with hospice things.  Most of it is simple start-up tasks, and I must say that I’m increasingly impressed with the hospice people.  They do what they say they will do, and they get it done on time

An example is my oxygen equipment.  Hospice doesn’t have a contract with the provider I’ve been using and wanted to change companies.  I agreed, and BANG! things started happening.  Yesterday the new equipment showed up—just in time for the prevous equipment to be removed—and I didn’t have to go without oxygen for even a minute.  But most of the morning, during my most productive period, there was a parade of people carrying equipment in and out. 

That’s probably why my first draft sucks more than usual.

Everything.  I’ve never known anybody who received hospice care, so I didn’t know much about it until this week. 

Yesterday I was admitted for care by RTA Hospice, which is the oldest and largest hospice provider in the country.  They have taken over all of my care.  All of it.  This means no more Dr. R, no more Dr. D, no more Dr. L, no more trips to the cancer center, no more radiation, no more chemotherapy, no more school, no more books, no more teacher’s dirty looks.  All of those things are part of the past now—just like all the years I spent at Maplewood Elementary School, looking wistfully out the window while Mr. Cline droned on and on and on. 

Instead, a nurse will visit me weekly, and more often when it becomes necessary, to find out how I’m doing.  She will coordinate with an interdisciplinary team—doctors, nurses, dieticians, and so on—to manage my care.  There will be a physician at the head of the team and it will provide care such as:

♦ Nursing Services
♦ Home Health Aide / Homemaker Services
♦ Social Work Services
♦ Spiritual and Emotional Support
♦ Volunteer Services
♦ Respite Care
♦ Education / Information / Resource Referral
♦ Hospice Related Medications
♦ Medical Equipment & Comfort Supplies
♦ 24 Hour Answering Service (for around the clock care)
♦ Bereavement Counseling (provided to the family for one year following the death of their loved one)

In other words, hospice does everything and more.  If there’s anything I need, all I have to do is call them.

And I don’t have to go anywhere:  they come to me!  This is a blessing all of its own.  Yesterday we went out for a final visit with one of my doctors, and although we were only gone a couple of hours, I was exhausted by the time we got back to the house.  If things work out the way they’re intended, I won’t have to leave the house, ever again—except to maybe go watch the new Batman movie this coming week. 

It’s a little unnerving.  I had no idea hospice services were so thorough.  But it will help us.  Annelisa needs an opportunity to get out and do fun things without having to worry if I’ve fallen down the stairs. 

I’ll miss the nurses at the cancer center, though.

The hospice lady will be here in a couple of hours, and I’m excited.  This will be a get-acquainted visit.  I’ll report on it tomorrow.

I don’t know exactly when the actual hospice care will begin.  In fact, I don’t know when it should.  Although the conventional sense is that this means six months, it’s hard for me to imagine withering to a lifeless husk between now and the middle of January.  On the other hand, Annelisa could use some help now.  She needs a break each week.

I can’t tell you how heart-warming it was to open my mail program this morning and find that I had received so many comments on yesterday’s post.  It’s nice to know that so many people care, and it’s even nicer to have them let me know about it.  Many of the comments were from members of a Usenet support group called alt.support.stop.smoking, affectionately known as AS3.  As the name implies this is for people who are quitting smoking.  I left a message there last year about my lung cancer and my blog, and the response was overwhelming.  I haven’t had time to get back there much, but the members of this group are some of the most caring, loving, and supportive people I’ve found on the internet.  If you don’t need something like AS3, good for you.  If you do, pay them a visit.

We saw Dr. R late in the day Friday.  He brought a nurse with him to the meeting, which I’ve learned to understand means that something important is about to happen. 

Dr. R told us that since the chemo has had no effect on my cancer, good or bad, it doesn’t make any sense to continue it.  So, we’ve exhausted our options as far as chemo is concerned unless we try something experimental, such as what TGen in Scottsdale has to offer.  I announced to all that I wasn’t interested in pursuing experimental programs, not even somewhere as close as Scottsdale.  Annelisa and I had reached an agreement about this a long time ago:  the decision was mine to make.  

So Dr. R recommended that I take a month off, kick back and rest.  Then he recommended that we talk to the hospice people about palliative care.  This was clearly where he wanted the meeeting to go; that’s why he had the nurse come with him.  He made a referral for me to the hospice after we adjourned, and they called us this morning.  A woman will be here tomorrow to talk things over with us.  We’ll see Dr. R a month from now.

To translate things, “palliative” means to do things that will make me feel better instead of fighting the cancer.  “Hospice” is medical code for six months.

So the other shoe has dropped.  How do I feel?  Odd as it might seem, I’ve felt quite a bit better, both physically and mentally, since we got home.  How does Annelisa feel?  I don’t know.

A couple of days ago, Leroy Sievers said this in his blog:

. . . what I really need is rest. I need a break. I just need this whole cancer thing to go away for a little while. An hour, two hours, whatever.

Problem is, I know that’s not going to happen.

But I can still pretend. I can send my mind off to other places. Places where the cancer hasn’t intruded.

I’ve talked about this before. I can send my thoughts to places where cancer is something that happens to other people.

So that’s what I do. For that hour or two I believe this hasn’t happened to me. It works for a while.

On-call denial, in other words.  I don’t know if I can do this.  As I’ve said before, I think I’m in denial most of the time.

This may have to change, however.  I just checked the calendar and today marks the end of the fifth week since I last had chemo, and I still haven’t fully recovered from that dose of poison.  Annelisa and I are wondering if it makes any sense for me to continue.  I’ve pointed out before that each chemo session loads me up with an additional serving of side-effects, and I seem to be becoming less and less able to deal with them.

We see Dr. R tomorrow, late in the afternoon.  I have a hunch it will be a difficult session, and I suspect Annelisa and I will have plenty to think about and discuss during the weekend.

I had no idea that it’s been more than a week since I posted here.  The bad part of the reason has been the pneumonia, which has knocked me down a bit, but the good part is that I’ve been having visitors, friends and family, almost nonstop since Friday.

I’ll be back, don’t worry.

So.  I saw Dr. R by accident July 2, when I went to get hydrated.  I didn’t seem to be recovering very well after the latest chemo session, and hydration had helped that time.  But Dr. R was there July 2, so I saw him first.  That’s when I got the “good news” results from the CT scan I had June 30.  I told him that I was having trouble with shortness of breath, and he said, “Hmm.  I don’t see anything in the scan that could be causing it.”

The next day, I had an appointment to see Dr. D, as a follow-up to the last round of radiation.  I told him about the shortness of breath, and he said, “I want you on oxygen now!”  That afternoon, the house filled up with oxygen paraphernalia.

Are you keeping up so far?  I went through the weekend using oxygen, and my condition seemed to worsen every day.  This went on until Wednesday, when Annelisa called Dr. R’s office.  She spoke to Dr. L, who fills in for Dr. R when he’s out of town.  We went to see her, and she said that my oxygen flow should be doubled!  She said that there were at least three possible causes for the difficulties I’d been having:  the hydration might have brought it on, I could have a pulmonary embolism, or I could have had heart damage from the chemo.  She ordered a CT scan, for which I had to go to the emergency room in the hospital in Cottonwood. 

What I didn’t know was that if they found a PE, they would have kept me.  But they didn’t, and what started out as a 4 PM office visit didn’t end until 10:30 PM.  The radiologist noted that I had some fluid in my left lung, however.

To add to the ignominy, I fell while walking from the car to the house when we got home.  I tend to lose my balance walking in the dark.

So, to summarize, I’m being treated for possible pneumonia.  This would account for the sudden onset, and the antibiotics are intended to address this.  We’ll know something in another week or so.

If you’re having trouble keeping track of all these twists and turns, don’t worry.  It won’t be on the next quiz.  I’m confused as well. 

To all of you who have expressed concern, thanks very much for thinking about me.  I’m okay;  I’ve just spent most of the week having this tested, that scanned, the other thing poked or prodded—and napping to recover from all the insults to my mind and body.

The doctors have been trying to find out what’s been causing my shorness of breath.  They’re still not quite sure, but the good news is that they haven’t found anything alarming so far.  Next on the agenda is ten days of antibiotics.

I’ll be posting more frequently now that the rush is over.

Life should NOT be a journey to the grave with the intention of arriving safely in an attractive well preserved body, but rather to skin in sideways, chocolate in hand, wine in the other, body thoroughly used up, totally worn out and screaming “WOO HOO what a ride!”

I’m not sure of the origin of the above quotation, but I thought it was worth sharing.  I’m slowly, slowly, recovering from a two-week adventure of chemo, MRI, CT scan, and physical therapy.  I’ve spent most of my afternoons in bed, and I’m going back for hydration this afternoon.  Tomorrow I have three appointments for various medical shenanigans.  Fortunately, none of them involve needles, tape, stuff to drink, or other unpleasantness.  Still, I don’t think any of them fall into the WOO HOO part of life.

I’m not sure the word applies.  But I’ll use it anyway.  It was heartwarming to receive the support and congratulations about Wednesday’s post.  In fact, one person wrote to me privately and said,  “Was that sucking sound of one foot coming out of the grave?”

I don’t know.  I am now scheduled for a CT scan on Monday, and I can’t allow myself to be too optimistic.  I don’t think things have improved in my cancerous lung.  The pain is about the same, and lately I’ve been having bouts of shortness of breath, even with the mild exertion of walking from my room to the bathroom.  After one such trip a couple of days ago, my blood oxygen saturation had dropped to 83 percent.  This isn’t good.  When I was being released from the hospital at the end of March, 2007, I had to show a level of 87 percent to qualify for supplemental oxygen.  I had to work pretty hard to accomplish that, and nowadays I can do it without even trying very hard.  I’ll talk to Dr. R about this when I see him for the CT scan results, but I think I’m going to be back on the O2 bottle.

And I need to use a cane when I walk.  I went for my first physical therapy session yesterday, and one of the things they taught me was how to handle a cane.  This is for balance, not weakness, and the good news about it is that it does indeed help.  I haven’t lost my balance while walking since I started using it.  I took my L.L. Bean hiking staff with me yesterday, and we adjusted it to the proper length for a cane.  So at least I can make people believe that I was once fit enough to go hiking.  And I’m now able to go up and down the stairs without clinging to things for stability.

I did feel good to get a bit of a workout supervised by a professional, and I felt better when I left.  I’ll continue to go twice per week as long as the insurance gods will pay.  And I’ve been directed to start going to the mailbox daily again.  I’d stopped doing that, mostly because I was staggering so much.  It’s impossible to walk in the shade to get to the mailbox, so even though the entire trip has to be done in the hot Arizona sun, I’ll probably enjoy it now that I can walk without worrying that I look like a drunk.

Dr. R called me at 7:45 this morning.  I didn’t answer the phone because I was just barely awake.  I had actually gone back to bed after my first cup of coffee, and I was nearly asleep when the phone began ringing.  I had to get up, stagger around the bed, squint like Mr. Magoo at the telephone, and decide, irrationally, that it was the cancer center calling and they could just %@&* wait.  I don’t think I pronounced all of those special characters properly, but you get the point.

Rufo wasn’t supposed to call me anyway.  We had an appointment set for Friday.  But he left a voicemail saying that the brain MRI I had Friday didn’t show any cancer.  I called him later and we high fived one another over the phone.  Next week I’ll get a CT scan, which I’m pretty sure won’t show me clean, but one can hope, can’t one?

We subscribe to Commentary, a magazine that focuses on politics and society.  Annelisa usually reads every issue cover to cover, and I read the articles she points out to me because she thinks I would find them interesting.  Commentary also publishes occasional fiction, and there was a story, “Many Seconds Into The Future,” in the December 2007 issue that Annelisa didn’t tell me about.  Why?  She wasn’t sure if I was ready to read it. 

A few days ago Annelisa gave me the December issue, with a bookmark to point out the story to me.  It’s about a 60 year-old man named Daniel, who is diagnosed with glioblastoma multiformes, the deadliest of brain cancers.  (This may be the same cancer that Sen. Kennedy was recently diagnised as having.) 

Daniel decides to decline treatment and let the tumor take its course: 

. . . he’s as good as dead.  A hundred years from now, the difference of these few months, even a difference of a few lost years, will seem an eyeblink.  After all, he’snot Mozart, he’s not Schubert.  What’s a few years more or less?

There’s a lot of similarity in how Daniel feels about his death and how I feel about mine.  I considered refusing treatment when I was first diagnosed, but I was assured that chemotherapy side-effects are now much better managed than they used to be.  I decided to try to buy a little time, and I’m glad I did.

Nowadays, things are changing.  The poisons are getting more poisonous, and I’m becoming more vulnerable to them.  Yesterday was the most difficult chemo recovery day I’ve had in the past fifteen months.  I have been doing these chemo sessions in the hope of extending my life, but now the question, “But at what cost?” is becoming more frequent in my thinking.

I don’t know.

I bought a PDF file of the story and I wish there were a way I could make it available to you, such as saying something like “click here” (you know, one of those places where the text changes color to show that you should click with your mouse on that word,) but that would be illegal and I might get thrown in jail or something.  The story is copyrighted, after all.

I hinted at a promise that I might write something about Walt Whitman yesterday, but in the end I didn’t write anything at all yesterday.

It wasn’t Walt’s fault, exactly.  However, I think he was partly to blame.  The line of poetry that caught my eye was “I . . . am not contained between my hat and boots.” 

I was planning to try to fit that line to my own little world.  But when you try to do that, you should at least give the poet the courtesy of looking to see what he meant about it first.  So I dug out the poem on the internet and found that it is more than 15,000 words long. 

I ran out of strength just reading the first page.  That’s the part that isn’t poor Walt’s fault.  I got pooped because it’s turning out that the aftereffects of the round of chemo I’ve been getting seem to get worse with each treatment.

You see, I’ve been getting three chemical in this round of treatments, and one of them has to be injected into the IV line by hand, over a period of 25-30 minutes, from a very large syringe.  And the nurse had to “gown up” before giving me this chemical, and it wasn’t because she was cold.  It was to protect her in case there was a leak.  That’s what makes this so scary, and it should be no surprise that this stuff is doing bad things to my innards.

So I don’t blame Mr. Whitman altogether.  I’m just tired.

This blog entry is almost shorter than the title.

• Wednesday, June 18, just a lost day. 
• Yesterday, chemo.
• Today, brain MRI.

More tomorrow.  Maybe a little Walt Whitman.

Before I get into all of that, I just wanted to mention that my clever daughter gave me two CDs for Father’s day.  I say she’s clever because she picked the CDs from my Amazon wish list.  One of them is “Five for Fighting,” which was composed by John Ondrasik.  Annelisa pointed out an article in The Economist about John, which was about how many times he re-wrote “Superman,” which I think is his biggest hit.  But the whole album was nominated for a Grammy, so it all must be pretty good.  Annelisa’s point, however, was that she isn’t the only person who keeps trying to perfect a work of art.

But what has me excited is that the other album my daughter chose is “Billie Holiday,  Remixed & Reimagined.”  I heard one track of this album one day last August when I was listening to KGSR, a wonderful radio station in Austin, Texas, over the Internet.  I was working on something, but I had to stop and listen.  It wasn’t just Billie that caught my ear, it was also the instruments playing behind her.  I thought how marvelous it must have been for her to stand in front of that group of musicians while she sang.  The problem was that it didn’t sound authentic.

It turns out it wasn’t.  The producers had sliced out Billie’s track from the original recording and created a more modern, 14-track production with new background music.  The track I heard on the radio was “Summertime,” and Billie would have loved it.  I’m about to open the CD and listen to it.

As to loose ends, I was simply referring to one of the advantages of having terminal cancer.  I don’t have to get any more colonoscopies, prostate exams, or tooth cleaning.  In other words, I no longer have to worry about preventive maintenance.

What I trade for this, however, is that I have to untangle the web I’ve created with my computer, and with our finances.  I don’t want Annelisa to have to worry about getting all the computer stuff cleaned up, and she likes things simple when it comes to paying the bills.  In other words, she doesn’t want electronic invoices and she doesn’t want to pay bills on line.  She even wants to use the telephone to transfer money from the savings account to the checking account!

So while I’m untangling my cobwebs, I’ll be listening to Billie.  At least I know I’ll be in a good mood for the first part of the chore.

POWER-PACKED FRUIT NOG

• 1 package instant breakfast
• 1/2 cup frozen yogurt or ice cream
• 1/2 cup double strength milk (below)
• 1/2 cup favorite fruit
• 1/4 cup egg substitute

Blend all ingredients together in blender.  Serve or refrigerate mixture for later use.  One serving: 570 calories, 30 grams protein.

DOUBLE STRENGTH MILK

Blend together 1 quart regular milk and 1 cup powdered milk.  Refrigerate.

You see, I’ve been losing weight.  My weight has fallen below 170, and Annelisa has moved into high gear, whipping up recipes such as the one above.  These recipes are from a four-page set of recipes for “Calorie and Protein Packed Drinks,” which Vicky, the dietician at the Cancer Center, gave me about a week ago.  (I think she sits in her office and watches the door, waiting for me to wander by.)

Annelisa doesn’t just follow recipes.  She always adds something, substitutes ingredients, sprinkles the tops of drinks with nutmeg—what else for a something-nog?—or cinnamon, or something else before serving it.  She’s been making me fattening meals as well.  And she stands over me to make sure I eat every morsel.

The weight loss is troubling, of course.  We all know about how cancer causes weight loss, and I remember reading that some cancer patients die of starvation.  I’m weighed every time I go to the cancer center, and every time I see one of the doctors, he or she asks me about my weight and appetite.

 I couldn’t ask for a better Ministering Angel.  I halfway suspect that when I head off to the cancer center, Annelisa calls Vicky and tells her I’m on the way.

Lately I’ve been focusing too much on death and dying.  I’ve read Tuesdays with Morrie, and I watched the movie.  I also read the book Morrie wrote himself, and I watched the ABC special Ted Koppel did with Morrie.  I watched Randy Pausch’s famous last lecture, and I read his book.  And in the past few days I’ve been reading a book by Kay and Herbert Kramer called Conversations at Midnight: Coming to Terms with Dying and Death.  Herbert Kramer was diagnosed with incurable cancer, and he and his wife Kay, a psychologist, wrote a book about it.  I’m only about halfway through it, but mostly the book seems to contain Kay’s thoughts and feelings, not Herbert’s. 

I’m thinking about putting the book aside and going to the other book I’m reading, which is a novel by Andrew Greeley.  Throughout all of this research, I was looking for inspiration and guidance, but it hasn’t been forthcoming.  It seems as though all of us who are waiting to die feel pretty much the same way about it.  We just express our feelings about it differently.  So, I’ve just about abandoned my little research project.

However, something has occurred to me.  During his academic career, Randy Pausch became acquainted with William Shatner, of Star Trek fame.  When Shatner heard about Randy’s illness, he sent a signed photograph.  It said, “I don’t believe in the no-win scenario.’

This stopped me when I read it.  I wasn’t sure I understood what it could mean, just as I’ve never been sure there’s much meaning in the expression, “zero sum.”  And after all, you can’t say I’m not in a no-win scenario, can you?  I’m going to die pretty soon, and I know it.  Where’s the victory in that?

But this morning it occurred to me that the real no-win scenario is for those people who die suddenly and unexpectedly.  I have time, time I can use between now and when I die.  It’s just like anybody else, except I have a deadline coming up.  Meanwhile, I can make the best of the time I have remaining.

I don’t really worry much about myself.  I hope I won’t die unpleasantly, but today there are drugs that usually eliminate that possibility.  But I do worry, a lot, about the people I will leave behind.  In particular I worry about Annelisa.  She’s certainly a strong woman, but she’s never been as alone as she’s about to become.

Morrie Schwartz had the answer.  In the Ted Koppel special, he said that it’s the responsibility of those of us who are dying to express our love to people, especially friends and family members.  I’m going to try to do that. 

I love you all, even if I don’t know you personally. 

And thank you, Captain Kirk.  This isn’t a no-win scenario after all.

A couple of days ago, we had new flooring installed in the part of my room where I have my desk.  It was needed, but it sure has been an interruption.  Annelisa and the floor installer forgot to tell me it was going to happen that day, so there I sat, paying the bills, when these guys with their flooring and glue showed up. 

Naturally, everything had to be moved out of the way, which meant that my computer had to be disconnected from the world and parked in a corner.  It took less than a day to get the new flooring installed, but It’s taken a few days to get the computer set up again.  I just don’t have the stamina needed to crawl under my desk time after time to get all the bits and pieces arranged and connected.  I’ve decided to limit it to one crawl per day.  I have only two items—my printer and my speakers—to go, and then I’ll be done.  In fact, I may ask Annelisa’s son to do that part.

Terra has given me an award.  From what I learned from her blog, it’s “This badge serves to acknowledge others who are, in their own way, smelling the flowers.”

Now I’m supposed to select five of my favorite blogs and confer the award upon them.  This is where the problem starts.  There are almost no blogs that I read regularly, and Terra has already received the award, which means I can’t give it to her.

It’s taking me a long time to recover from last Thursday’s chemo.  After a full week, I still have annoying aftereffects, and fatigue is probably the worst of them.  I had my last radiation treatment Monday, which might be a reason to expect things to improve, but one of the things radiation does to me is to make me tired all the time.

I learned something about fatigue when I was a Boy Scout.  On camping trips, it seemed that I was just too tired to do much of anything.  But after the first few camping trips, I discovered that if I went ahead and did the things that had to be done anyway, the fatigue magically disappeared.  Unfortunately, today’s fatigue doesn’t respond the same way.  If I crawl under my desk to connect a few wires, I’m not more energetic when I crawl out.  In fact, I’m more tired.  Yesterday I tried to take a nap after my under-desk excursion, but it didn’t work.  You see, the wind was blowing so hard the noise kept me awake.

But all that is okay today.  I like thinking of myself as Ferdinand the Bull.

I’ve got this long, thick rope in my hands, and I’ve been sliding along it for a long time.  At the end, there’s a knot that will stop my slide.  Beyond the knot, there’s nothing.  Unlike many people, I can see that knot down there.  But that’s a mixed blessing.

A rope isn’t a perfect metaphor for life, but I like it anyway.  My rope has been very good to me, and I’ve had some wonderful experiences as I’ve gone along.  Sometimes I’ve gone too fast to suit me, and sometimes I’ve gone too slowly.  Some sections of the rope have chafed my hands and other sections have soothed me.  Often the rope would begin swinging, making me uncertain.  Sometimes I could defy gravity on my rope:  It has taken me in almost every direction, not just down.  Sometimes it was east, sometimes west.  Sometimes I would pause, uncertain. 

But I could never climb up; I could never go back.  Nobody can.

I don’t want to be maudlin, but my present location on the rope needs to be considered and discussed.  The chemotherapy I’m being given now is the last resort in modern treatment regimens for small cell lung cancer.  There’s little left to do if it doesn’t work.  To be sure, my trip to TGen this week has confirmed that I can probably get into a clinical trial, but I’m wary.  It would involve a lot of exhausting travel, uncertain results, and the possibility of physical discomfort even more severe than I have experienced so far.  When is enough enough?  I don’t know.  We don’t know.  Annelisa and I have discussed this dilemma without reaching a conclusion.

To his credit, when I talked to Dr. R Thursday, he gently encouraged me to continue, but he said he understands my concerns about the cost, both in dollars and in physical and emotional distress.  It might be a surprise to some people, but spending my days with a kind of certainty ahead of me, even with only a vague sense of how quickly thing will go, has a certain comfort to offer.  There’s even more comfort in knowing that even though today’s decline will continue and might accelerate, it won’t be punctuated with disruptions from unfriendly chemicals and radioactive rays.  Who knows, I might even be able to grow some hair!

I’m not morose about this.  As I’ve said before, dying isn’t a tragedy for the person who dies.  And besides, the steadiness, even if it’s a steady decline, will make me better able to focus on the people in my life.  Perhaps they can learn from me, and I can certainly still learn from them as well.  And we can all get additional benefit from the love we have for one another.

That’s one side of the equation.  The other side is that I could continue to fight.  I could follow the entreaty of Dylan Thomas to his father and rage, rage against the dying of the light.  But so far, rage, rage has cost me about half of my hearing, all of my hair, my equilibrium, muscle mass . . .

I’m still undecided.  But there’s no rush.  The plan at the moment is to finish the current course of chemo, get the scans done, and go back to TGen to find out more about what they have to offer.  That will take us into the middle of July.

I get radiation and chemo today.  The strategy for the chemicals I’m getting now is to allow a three-week recovery break between sessions, and that seems about right.  In other words, I’m just now beginning to feel more normal.  So, of course, it’s time to give me another drubbing.

Yesterday I had another radiation treatment.  Now I have three or four to go; I’m not sure at this point.  I’ll be happy when it’s over because of the tight mask they made for me.  Luckily, one of the technicians is a racing fan, so we can talk about something that will distract me while they’re trying to mash my head into the table.  At least they know I want them to hurry.

I talked to the radiation oncologist after yesterday’s treatment.  He was pleased with the progress I’ve made with the lump in my neck.  I told him I still had chest pain and he told me it was the same kind of cancer cells, so things should start to improve.  I believe him.  I didn’t have to use any morphene last night.

We’re off to Scottsdale today to see Tgen, the experimental clinic I wrote about a few days ago.  Annelisa has insisted that I’m not strong enough to make the drive myself, so she’s going to do most of it.  I’ll drive when we start to get into the Phoenix metropolitan area.

It has been something like eight years since Annelisa has driven on an interstate and in heavy city traffic.  She’ll do well, but I think she might be apprehensive.

This brings to question how we’ll handle things if Tgen wants to treat me there.  Somehow I’ll have to get to Scottsdale and back home for each treatment.  I actually believe I could make the trip by myself right now, but there will come a time when I won’t be strong enough.  While Annelisa will be more than willing to be my driver, I wish there were some other way.

Did you?  It was on the Fox News website this morning.  It’s a couple in Indiana who got married on a roller coaster, by an Elvis impersonator!

Is there some way I can stop this kind of thing?  I don’t mean the wedding, I mean the news coverage.  Doesn’t Fox News realize how difficult this makes it for an Indiana boy married to a Southern California girl?

I mean, haven’t I already taken enough snorts and snickers from Annelisa and her family?  They didn’t know a thing about Indiana when I got here, but they sure had some opinions—they thought Hoosiers go around barefoot all the time, for example.  I had to give them a PowerPoint presentation on Indiana fer godssake!!  They made wisecracks about my “quaint” Indiana accent, and they were so incredulous that they hired a fact-checker to make sure I wasn’t lying.

Now when I’m finally making progress convincing them that Indiana isn’t a backwoods state full of hayseed bumpkins, here comes something like this! 

Now what do I do?