The Cancer Files

It's been some time since I updated my faithful readers  on the status of the cancer paperwork.  If you'll remember, the cancer file started out like this.  It has clearly mushroomed.

The other interesting thing is the status of the Cancer Bills.  So far, total bills are $113,794.09.  Of this amount, the insurance company has actually paid $45,988.44.  Of the total $113,794.09, 56% was "contract adjusted" or disallowed.   Wow.

Hair today, gone tomorrow

So I thought I was going to get out of this cancer thing with no hair loss (on top... The radiation had a certain depiilatory effect on my nether regions... TMI).  Yesterday I suddenly had a sink full of hair after taking a shower.  And then today there was much more.  I wasn't concerned about losing my hair until it started happening.  After a hard shock, I'm reconciled to it- I've got a lot of hair to lose, so maybe it won't be too bad.  In any case, I now have tremendous sympathy for kids and women, for whom hair loss has to be much more devastating.

Other than exhaustion, most other symptoms are mild. Benedryl takes care of the itching, no real nausea, and Zofran takes care of the little of that.  I haven't been sleeping well, but that's not new.  The hardest part is just being wiped out and knowing that the cumulative effects will just get worse.  Psychologically, this is as hard as anything before it.  I think it's knowing that the cancer is gone, but I feel like I'm fighting chemo and not fighting cancer.  I'm dreading the next round.  Ugh.  Six more cycles.

I've mentioned before how I identified with the Sorrowful Mysteries of the Rosary.  I equated the Agony in the Garden with the diagnosis, the Scourging at the Pillar with radiation, the Crowning with Thorns with the surgery, and I thought the Carrying of the Cross was going to be the remainder of my life living with the consequences of the surgery.  Now I look at chemo as the Via Dolerosa.  In Mel Gibson's Passion, it's almost unbearable to watch Christ's repeated falls, and the tremendous distance He has to cross before reaching Calvary.  The Chemo road feels like that - stretching on forever.  I'm 1/4 done with treatments, and there's no Calvary waiting at the end.  But poor me!  Lord you are my hope and my salvation.  Help me embrace my cross.

The Unbearable Itchiness of Being, Redux

So, I finally got to sleep around 6:30am, just as Elizabeth was getting up with the girls.  I was able to sleep until 9:00, when I woke up to find the house empty - Elizabeth had gone out to get McDonalds' biscuits (yum!).  I was awakened by The Itch, which had now moved into the various regions that had been sliced & diced in surgery.  Needless to say, those aren't areas that I want to scratch. 

Reading through the chemo drug information I now find that itching, rash, etc., are possible side effects of one of the chemo cocktail drugs.  Great.  But maybe it can be treated.  Elizabeth called the oncologist's office to find out what to do about this.  In the meantime, grin & bear it, and offer up sufferings for a special intention.

Which brings me to another point, which is the soteriological aspect of human suffering.  I think I have mentioned before that union with Christ's suffering was my desire as I went through this cancer thing.  But even in the worst of the radiation side effects, I can't say that I felt closer to God.  I think I'm understanding why.  While God may have given me the strength to make it through the course of treatment, and certainly buoyed me up through the surgery, I was still self-focussed.  I was trying to join with Christ without any understanding of why Christ suffered!

The key, I think now, is not to embrace those sufferings for my own sake, but to do as Christ did and embrace those sufferings for others.  The realization for this came from the homily at my friend Jeff Emitt's funeral mass.  I'm going to try to follow in Jeff's footsteps with regard to whatever sufferings remain in this round of chemo - not for the purpose of growing in my relationship with Christ - but for the a priori purpose that these sufferings might be redemptive for an other.

How this works is a mystery, but it is the core of the Christian message.  O felix culpa!

And that's all well & good, but I wish this itching would stop...

The Unbearable Itchiness of Being

The title probably speaks for itself, but man... am I itchy.  And can't sleep.  I was actually asleep for about 30 minutes tonight, but I was awakened by a roving itch that struck me in my feet (not unusual for me) but now in my thighs, armpits, head, groin.  Man this is annoying.  I don't know if this is a chemo thing or not, since I've been having trouble sleeping anyway.  Aargh!

Chemo Surprise!

Today's chemo brought two new symptoms which I didn't have in Round 1.  The first was encountered when I sipped from a Red Bull in the truck on the way home from chemo.  All of a sudden, an intense, tingling pain shot through my jaw bone on both sides of my mouth.  I've since discovered that this pain arrives when I chew something, or drink something sweet after a long pause since the last food or drink (water doesn't bother me).  This is an interesting phenomenon, but not as worrisome as the next.

Secondly, I discovered that if I rub my eyes, my vision when I open my eyes is suddenly restricted to a small circle, kind of like looking through a telescope backwards, which is surrounded by a radial tiger-stripe pattern that fills the rest of my field of view.  It went away after three or four seconds, but it scared the hell out of me and now I'm afraid to rub my eyes.

Other than that, the tingling fingers is the most annoying thing, next to the presence of the chemo pump, which I don't like one bit.  But my attitude is much better on this round of chemo.  The first round took me by surprise and I was deeply depressed and miserable when I left Thompson Cancer Survival Center.  This time around I had fun joking with the nurses and studying Latin, and was in a much better mood (which persists to some extent).  No real nausea yet - just some queasiness.

Realization

So I'm sitting here in round 2 of chemo.  Blood work looked good today (WBC and homogoblins), Oncologist is concerned about my weight loss (I'm not).

I've got the chemo cocktail pumping into me via a "port", which is some sort of device, about the size of a grape, that was surgically implanted near my left collarbone.  The port is connected to a vein so that they can just stick the needle in the port and not have to do a regular IV.

Anyway, I just realized that if they had installed the port on my right side, they would have had to call it a "starboard" instead of a "port."

Ha ha!  You can stop laughing now, by the way.

Farewell

Yesterday morning my friend Jeff Emitt died of cancer after a long, long struggle.  I think Jeff was originally diagnosed in 2004 or 2005 - I know it was before my first wife Jessica died because she & Jeff spoke on the phone after his diagnosis.

Jeff and I shared many things in common - we are both Catholics, members of Knights of Columbus Council 645, sailing enthusiasts (Jeff was a better sailor), guitarists (Jeff was a much better guitarist), and both widowed.

I met Jeff in the late 1990's at the Knights of Columbus council hall on Magnolia.  Back in those days, after the Monday night council meeting, some of the Knights would retire to the bar downstairs and hang out or shoot pool.  Greg McGinnis, Stu Metz, Jerry Barkley, Thomas Thornton, Two-Bears Hebert, and I were usually to be found there.  I believe Jeff was the witness to some of the awful games of pool when Two-Bears put the mojo on me and forced me to scratch.  That Indian/Coon-Ass mojo is a hell of a thing!

Jeff (on the left) in the SJS kitchen

While I knew Jeff generally, it was not until the St. Joseph School Mardi Gras dinner in 2002 or 2003 that we really hit it off.  Jeff & I were on the dishwashing crew.  Some of the Montgomery family had smoked entire sides of prime rib for the Mardi Gras, and they had seriously overestimated the attendance.  So, after the paying patrons had been served, Jeff & I descended upon the heaps of prime rib.

Now, Jeff was 6' something and rail thin, whereas I am 5'7" and at the time was already tending to "stocky".  The two of us advancing on the pile of prime rib must have been a hilarious sight.  I can't remember which one of us won the prime rib eating challenge, so it probably wasn't me.  And this was back in the days when I could knock off a 48 ounce prime rib with room to spare.  I don't know where Jeff put all that food.

Jeff waving from the bow of Jim Cortese's boat, K of C summer picnic 2005

I would see Jeff on and off at K of C functions over the years - I hung out with him at his house in south Knoxville on at least one occasion (and was amazed at his wall of amplifiers!).  He began his fight with cancer roughly around the time that Jessica died.  I saw him infrequently, but followed with admiration his determination to enter the seminary when he had emerged victorious from his battle with the disease. At the time I was considering a monastic life once Elena was old enough to be on her own.  I figured I would tough out ten years on my own and then retreat from the world.  Jeff went further - choosing to engage with the world as a priest.  He would have made a great priest.

I kept up with Jeff at holidays and on Facebook.  We were always going to go sailing at some point in the future.  Not too long ago I realized that Jeff was back in Knoxville and that cancer had returned.

Then I was diagnosed with cancer.  Making a pretense that I was coming up to Lake Tansi to play guitar, I visited Jeff in February of this year and let him know that we had one more thing in common.  We spent the morning talking, and then went to his choir practice and met briefly with Fr. Dowling.  Jeff excused himself for a moment and when I went looking for him I caught him exhorting Fr. Dowling to pray for me and my family.  Later that afternoon I packed up to return to Knoxville, promising Jeff that I would come back soon and help him organize his bills.

I never made that return trip.  As always, there are excuses.  Jeff I and spoke by phone a number of times, so I followed along with his decline as he followed my treatments.  In our last conversation, I told him that I would come up to Lake Tansi to see him once I was off of the Lortabs.  Jeff asked "did they tell you that you couldn't drive when you were taking hydrocodone?  That's bullshit."

I am comforted knowing that Jeff ended his days with the support of his children and the church, and that he has taken his place in his "heavenly home."  Farewell, my friend.

Diagnosis +173, Post-op 33, Chemo Day 1

Aaargh!  Friggin' pain in the ass won't stop.  Down to one or two hydrocodone per day, gobbling Advil by the handful - rarely get any serious relief.   Still hurts to sit down (well - it's uncomfortable to sit down), but tired of standing up, kneeling or lying down.

Had the first day of chemo and wrote this letter:

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Dear chemo,

I apologize for saying that it was going to be a piece of cake to do you for the next four months.  I see now that you are not to be taken lightly, and that I'm not going to "make you my bitch," as I may have flippantly suggested.

Best regards,

John
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This friggin' port they installed in my shoulder is driving me crazy.  There's no getting away from this eerie lump under my collarbone, and now there is a needle & IV installed into it, along with a long IV cord attached to a pump the size of an Apple Newton that dangles in a man-bag from my shoulder.  The IV cord is perpetually getting in my way and the damn pump keeps wanting to slide off of my shoulder.

I feel weird.  Not necessarily nauseated but definitely weird.  They warned me that I was going to have heightened sensitivity to cold in my finger tips and toes, etc.  They may have also mentioned that I would want to avoid cold beverages.  I, of course, said "fuck-it!" and asked Elizabeth to bring me a bowl of ice cream when I got home.

The pain in my tongue that blossomed out when the ice cream hit my mouth would have to be felt to be believed.  Of course, being stubborn, I had to eat the entire spoonful, and I felt that ice cream all the way down.  This is a damn same because when I have been waking up in the middle of the night (thanks to ass-pain), I have idled away a good 10 minutes by enjoying individual ice-cream servings while quietly pacing the house.  Oh well - gonna have to find some other source of calcium and comfort.

The worst part is psychological.  I have felt like I've been getting my life back a little bit - braving car trips, a little bit of time in the office, going to mass and going out in public.  This feels like a step back.  I have this friggin' pump to drag around now, and now I can't enjoy any cold beverages or ice cream.  Every two weeks I've got to go sit in a chair for 1/2 day while they pump in various noxious chemicals.

Do you get the idea that I'm feeling sorry for myself?  Well, you're right.