Time for generics

If you had any plans to buy me expensive wine, or take me out for lavish dinners, let's put them on hold for now*. The good news is food no longer seems like it is all made from powder. The bad news is that it no longer has any taste.
It is pretty weird, I can still get the general sense for what I'm eating...sweet, sour, etc. but the specific flavor is all but gone...and everything tastes like chicken. So, if you've got a favorite place for dinner...its my new favorite too!

Runny eggs? Yum!
10-day old meatloaf? Bring it on!
Fruitcake? Did you say steak?!
Grits? Yeah, about the same.

So, my list of chemo cut-backs for the frugal cancer patient:
-Any meal over $7
-Any bottle of wine over $2 (**caution as this may lead to an increased/offsetting investment in Advil)
-Shampoo
-Razors & shaving cream
-Barber
-Tickets for amusement parks, zoos, ball games and generally any place full of sniffling children.


*Just kidding, please send me the wine anyway. Lavish dinners will be accepted dutifully sometime next year.

Mushroom Topping

You'll have to bear with me, the eyes don't like the screen...so if I weave a incongrous tapistry of nonsense, you'll have to go read someone else's testicular cancer blog. Good luck with that.

This week's recovery was slightly better than last time, maybe more physically prepared, maybe more mentally prepared...who knows. The illness was there, but I packed my anti-nausea pills more closely to the belt. The toxic stomach came back, but the anti-acid's were at hand. I took the Neulasta (the long-lasting big brother hit of Neupogen) on Saturday. Same weird pain, mostly headaches...more prepared this time with my Advil on the side.

Sleep is still uncomfortable, especially as it cools down outside, your body likes to make excuses to keep you from venturing outside of the covers. So, as your bladder screams, your head pounds and your stomach wretches, it seems perfectly logical that you should wait another 15 minutes because the pillow feels good right there.

So, as I said, it is getting chilly. Not Toronto chilly, that's only for lunatics (snow!?!)...I won't even mention those who live in Ottawa. We're talking Atlanta chilly. A bit brisk, towards freezing at night, a breeze or two. Cool enough to realize that I need a critical addition to my cancer-wardrobe...a hat.

To most guys, this is a simple feat, you walk into your closet, pull out a salt/sweat stained nasty rag, place it on your freshly schorn noggin, and off you go. Doesn't work that way for me, since I was a child, no hat wished to be placed on my head. It would promptly bring ridicule and laughter as clearly a hat does not belong on my head. I've settled in recent years to the hybrid, green-hat option of the visor, I still force my head to feel the agony of global warming (those of you who know me, know the context of that statement...), while still looking delightfully good in the sun.

Anyways...for those that may have failed physics, have never seen a visor, or were otherwise unable to draw inside the lines during pre-school, the visor does not offer baldness-supportive warmth during such months. It behaves more like a chimney to freeze the core of my body capriciously with every breeze.

A toque/stocking cap seems to be the item of choice.

***Note***
This is where I clearly become a foreigner around here. Somehow the southerners have twisted the English language to accept TOBOGGAN as an acceptable substitute for toque/stocking cap. And as with all Southerners, there is no arguing, it is just the way it is. You point out what a toboggan really is, and that it would be a tad uncomfortable, even unfortunate, if one had to wear one as a hat...and their response is "I don't know what you're talking about, it is a stocking hat". "No" you say, "a stocking hat is a stocking hat, a toque is a stocking hat, a TOBOGGAN is a damned sled that kids use to ride down a mountain" "Well, its a stocking cap here." In "southern" I've learned that "here" actually means "so <bleep> off". That might be useful on any trips to come visit.
***End Note***


So, off to the store. With my supportive wife (from the "lay off the sauce" fame). We started with the mall, must be something classy, not too high-school oriented that I could pick up there, right? No dice. I tried on every damned shape and size of hat available...beanie to cowboy, dunce to bowler, toque to toboggan...all left my wife with the same glowing laugh, "you look like a mushroom!" To which she'd pat the top of my head and look for the next costume for my dress-up game. Upon the next try she might add "yeah, if you had hair, this one might look good". Damned if she weren't so cute I'd have tackled her right there in the store.

After a trip to REI, and what appears to be a military surplus hat, I now can be sheltered from the artic blasts storming Atlanta. However, supportive as my new hat may be, I'm unsure my crushed self-image will ever recover from the mushroom-ridicule of 2008.

Week 2 almost in the bag

Just off to the races this morning. We tapped up my left arm this time, the nurse let me know the track-marks on my right arm were beginning to look a bit "gross".
Back to the left arm where I got all the pain last time from the potassium. Turns out I messed up that vein quite a bit, feels hard as a rock from the round that burned me up over there. We'll see how things go today, may have to switch back to the right arm again if it starts to get worked up on me.
The fatigue is definitely setting in earlier and harder this time around, slept almost all day yesterday. It is a strange sleep...when you wake up you're fine to do whatever, close your eyes for a minute, and you're asleep for 4 hours (or until your bladder wakes you up).
My eyes are getting a bit more difficult to work with again--focusing on the screen to type this is a bit of work, suspect it'll get harder through the next couple days. Could mean you'll have to search out other venues of entertainment, perhaps even catch up on this "election" that's going on.
The sickness is similar to last time, not too bad. Just an ever present "din" of sickness, makes you want to avoid food and drink, but for a few minutes a day. I'm not really nauseated too much, but after eating I never feel like I'm actually digesting the food...just seems to sit there with me for the next few hours. Nice. Learned to sit up & sleep post-meal.
Tomorrow I'll be off to get my Neulasta shot to keep the WBCs up for the next treatment. That should mix the bone pain with the fatigue, an enticing mix indeed. So it goes.

So, about half the journey has elapsed, things still on track. Only casualties are a couple veins and a lot of hair. Neither ever made me look too good anyway.

Queasy Bake Oven

It's not easy, being queasy. At least today is better than sitting beside the snorer from yesterday, you know the kind of snoring that is impossible to ignore...deep, startling, goes silent for a minute just to throw you a new curve on human sound.

So, I'll enjoy my silence, if only disturbed by nausea that doesn't seem to want to quit today. Yuck. Bananas are a friendly food in this situation, my sandwich has very much lost its appeal. Bread seems like a horrific food. I see smoothies in my future.

Went for a second round of head shaving this morning, as the stubble began to come out in the shower from last round. Weird sensation, the razor didn't drag as it does normally...more seemed to snag the hair and pull it from the root...no resistance. Same with the stragglers on my beard. I had the facial hair growth of a 14 yr old boy. While cool, I decided to get rid of it to prevent the hoardes of teenage girls from being impressed.

Generally, my body seems to be reacting about a day earlier than how I felt last time. The previous round on Tuesday I was still up for a long walk. Not so much last night, was fading fast by 9 and was barely awake by 10pm. Didn't feel all that well last night either. Normally my "morning sickness" would pass by the time I was out of the shower, but now it is lingering with me through the day too.

Still, all things considered, I'm at about a 2 on the scale of 10 for side-effects. So I haven't room to complain. And without "snorey" sitting beside me, my blood pressure is probably a lot better today as well.

Wonder Drug

My WBCs were literally off the charts today, proving that people should buy stock in Amgen. With the new set of WBCs, I have discerned that I am now functionally invincible, and have taken note of some interesting statistics since this morning, the polls will close at 7 pm ET.

• At least 9 out of 10 cars have not hit me today, proving that my invincibility extends to my vehicle. Melissa getting in the garage is another story. I'll refresh this statistic once she arrives home. :D
• Almost 100% of the other patients in the infusion ward didn't get attacked by wild animals while I was in the room. Therefore, my invincibility may be transferable to other humans as well. I'm unsure of its lasting effects, so don't get cocky.
• 9 out of 10 homes have not been torn town by large equipment in my neighborhood. The one that did had it coming. I never much liked that house anyway. Therefore, my invincibility can be withdrawn, if I didn't like something in the first place.

I will be taking dares for the rest of the day in return for compensation. I've already accepted one from my brother for $100 to shave my head. Done and done. Pay up sucker.

Day 1, session 2, in the books.

Caged Fighter

My WBCs slid much lower over the last few days, creating a new dynamic for existence. While it doesn't appear the weakened condition will lead to a delay in my next round on Monday, it does create yet a new dynamic. I suppose I needn't be in fear of losing my anonymity for the time being.

The instructions I received today are virtually identical to those fearing biological warfare. Now fighting the everpresent enemy, the one that envelops the world so completely.
Don't touch.
Don't eat.
Don't breathe.
It's best you avoid people.
If you must see them, be a masked man, avert your eyes and bury your head.

Now to the magic shot, the potion that will keep us from amputating your finger from a paper cut, from hospitalizing you for a sneeze. What an amazing world; fighting an invisible enemy with a weapon that can't be seen.

So, armed with my weaponry, I will sit and fight an omnipresent invisible enemy, without flinching. Waging a battle for my survival without looking at my enemy, guided solely by the actions of the unseen. And you still think I'm talking about the drugs.

The foolish are easily misled into trusting the wrong savior.

Whomever says this world isn't full of faith just hasn't looked for the invisible.

Hair Today, Gone Tomorrow

Cancer is a funny thing...it pretty much defines you for some portion of your life and becomes an inescapable web of experiences that all lie within the broad umbrella of "cancer".

Today my hair is falling out, I'll give it the gentle push and just shave it all off before creating too much (more) of a mess on my pillow. It is an interesting step as it removes the last shroud of anonymity, and normalcy, from the experience.

The last 35 days have been almost consumed by cancer. You wake up in the morning with the realization, again, that you still have cancer. You go to bed at night with the same thoughts. The bruising on your arms from chemo, while not apparent to others, reminds you as you turn over at night that you are still there. You get a lot more phone calls. Emails are a continuous reminder of your support group. Smatterings of get well cards, even from folks you've never met, greet you in the mailbox each day. People have tears in their eyes more frequently. As a patient you rarely have a discussion that doesn't start or end related to your health. You rarely have a conversation that doesn't include the word cancer, or chemo. You're no longer a husband, son, brother, friend, co-worker. All of them now carry an asterisk. That asterisk denotes, larger than your relationship definition, that you have cancer. Indeed, it is the first thing people see. Not incorrectly, not badly, not upsetting. Different. It is what it is.

Cancer Is Omnipresent...save for anonymity. There was still the fleeting moment or two, when you'd walk into a store or restaurant, and you were still a regular person. The people around you don't know you, and still shuffle through daily existence without a second glance in your direction. For brief moments you can wear the cloak of normalcy, people smile at you without tears in their eyes.

Today I suppose that goes away too. Just like wearing the IV for a day defined that I was still a cancer patient when I got home, the too-white bald head will give away my asterisk no matter where I go. The hair is the least important thing, the complete loss of normalcy is a different game.

When I was taking martial arts years ago, I had my head shaved pretty close. Prior to beginning some more "hands on" fights, our master reviewed our equipment and gave us pointers so we'd be prepared for the eventuality of injury. When he spoke with me he said he liked my haircut.

When I asked him why, he smiled and said "when you're in a fight, you don't give your enemy anything to hold onto."

Round two is about to begin.

Any one got extra white blood cells?

Well, crap. My WBC (white blood cell) count is pretty low, so I won't be able to do my regular rounds scrubbing toilets at the walk in clinics.

I'm too low to do treatment now, but am scheduled to go back later this week to see if my counts come up to normal (low) levels. If not, I may have to either take some shots to increase my WBC production (thank you Amgen!) or potentially delay treatment...a pretty horrible option from my point of view. So...we know what we're praying for this week.

Just reviewed the financials so far, for those of you that are interested. So far >$35k billed to insurance company, $29k of which was reviewed, insurance company is paying just over $8k, we're out about $1k in various fees/copays, etc so far.

The startling number is the difference between billed & paid, $20k (once you remove what we've paid). I'm not exactly sure how the whole system works, but I'm surprised nonetheless at the dramatic difference between what a hospital bills for service and what the insurance company will actually pay for that service. This is where a known issue that a lot of folks have duped has come in, where the hospital bills the patient for the balance (which is illegal)--and if (they have not) my hospital did it, we'd receive an invoice for $20k in unpaid balances. Not a risk in our case, but I'm not surprised about the how/why it happens. The surgery is the largest discrepancy, by far--only about 15% paid by the insurance company. In my opinion, for all that was done that day, the number paid out is exceedingly low for the number of specialists involved. Remarkably low. Hospital losing money kind-of-low.
Each day of chemo is billed at just over $2k, insurance paid is just over $1k, and out of pocket is $25. That doesn't include the secondary/prophylactic drugs (anti-nausea, etc.) that I take at home.

That being said, three things from this:
1. Insurance companies apparently are doing a good job negotiating rates with docs. I'm surprised that docs are willing to participate at this % of their fee schedule.
2. I'm delighted by our insurance coverage. The largest expenses have been meds and copays, both a deal considering the nature of the disease. Financially, we hardly have cause to bat an eye...especially when I compare it to our investment performance.
3. If you don't have insurance, you have a hell of a lot of room to bargain. The first question you should ask is what would a large insurance company pay for this same procedure, that alone could get you an 85% discount from "list"! Then go from there on the negotiation...

Back to growing some more WBCs.

Unrelated Note

I think we're done with home improvements. Now that Lowe's considers us a commercial customer, I believe we've done enough. On a related note, and outside of the commercial customer letter I got from Lowe's today, I'm feeling pretty durn good.

I asked if we could move the treatments up and/or get more aggressive. Apparently Dr. D thinks that is "unsafe". Me? I think cancer is unsafe. Not sure who should win the argument as both could kill me. Conundrum.

Itching to push the fight forward...my inspiration for the day: David Farragut

Coming out of Hibernation

Well, the eyes are still a bit shifty. The weekend was a complete write-off, pretty hard to do much more than wander for a few moments at a time across a room and find a new comfortable spot.

In the midst of absolute boredom & fatigue, your sub-conscious companion tends to pipe-up a bit more, even without an invitation. Consciousness will wake you by pointing out the obvious, and by placing maddeningly simple orders into your head. "Take the cover off, you're too hot." "You're hungry." "You're sick." Too bad I didn't have the ability to respond coherently...I'd like to think I'd have put him in his place.

Fatigue, coupled with the inability to read or use my eyes consistently, bore a bit more on my sanity. It was too difficult to check email, read and *gasp* watch football. The eyes are still shaky, but are recovering this afternoon...hopefully I'll be up to full form tomorrow.

Just got back from the docs where they took blood levels. It was about all I could do to make it in & out of the place...feels like I'm 90 years old, and God knows have I have to visit the bathroom as consistently. Somehow (great news!) all my blood levels are at or above normal--this is great for treatment.

Though now my wife holds onto the paper claiming I'm a faker because it clinically says I'm just fine. In fact, while I struggled to stand in the elevator full of various other docs, nurses and patients--while I'm grasping onto the wall trying to prevent full-collapse, my wife not-so-quietly utters "you need to lay off the sauce". Nice. That's why I married her. At least that's what I tell myself now.

This week should be more recovery, so hopefully I'll be back in full form shortly...assuming these pesky eyes begin working again.

Day 5 - Failed Engineering

Well, this morning I learned why both my wife & I are in marketing and not engineering. I decided last night to keep the IV port in for an extra day to ease up on the procedures this morning. Instructions were simple enough: keep it dry. Before showering, just wrap up your arm in saran wrap, seal up the edges with this medical tape and you'll be good to go.
About 90 seconds into my shower I'd succeeding in creating a foot-long water sausage around my arm, completely bathing my IV in warm showery goodness. The fantastic part of it was though I could somehow let all the water in without a fight, there was seemingly no way to let it out. So...on with the shower, water sausage and all.

The fatigue is a bit more heavy over the last 24 hrs. Once I got back last night...after a LONG day here (past 5pm...more than most of you schmucks put in at work, and no, I didn't take a lunch break either) I slept basically from the time I got home till this morning. Two learnings:
1. Even if you sleep all evening while on chemo, you won't have too many problems getting through the night too...I thought I'd be up all night, other than my 40 trips to the men's room, no disturbances!
2. Don't eat chick-fil-a while lying down and expect your body to do a good job digesting it.

These next two days are apparently the lowest of the treatment as my white blood cell count plummets into the nether world...no visitors, apparently the only focus I need is to make sure I'm sitting up while eating. Back to basics.

So...almost 25% of the way through the treatments. I'm sure I haven't hit the worst of it yet, but this is a far cry from being impossible to get through. Just another walk in the park. Hopefully the weather holds up this weekend and I can relax in that hammock my brother got me...

Day 4 - Setting in a bit

Well, things definitely started to settle in yesterday. By the time I got home I was pretty wiped out and just stayed buttoned to the couch most of the night before heading to bed early. Food has started to turn on me a bit...everything seems like it was mixed from a powder (including water). Not ideal, but not the worst thing in the world either.

I got a good night's sleep, but woke up with the first tentacles of nausea tugging at my gut. Again, nothing big, but unfortunate nonetheless. By the time I got up and about, I started to feel fine again.

I'm definitely a bit more hazy this morning. Fingers aren't hitting all the right keys on the keyboard...I'm getting used to hitting that backspace key a bit more frequently than normal. All vitals are good, but the veins are getting a bit tired from all the punctures & injections this week, so the IV took a little while this morning to cram in there...fun, fun.

So...the first taste is beginning to settle in. Nothing that can't be handled though.

Start of Day 3

Things are still pretty darned good. Still no signs of nausea, but it was a bit more difficult to sleep last night..."travel proud" in Dyer-language. Went again for a walk last night, and had another "early" evening...lights out on the couch around 10, in bed shortly thereafter.

A bit of a haze is setting in, but not anymore than you'd expect from a difficult night's sleep. I've been far worse with just the feeling of a cold coming on...so no registered complaints.

I'm still working through the day and can't bend my head around wasting around watching TV & movies just yet. It is actually easier to work without the co-worker distraction. Other than the periodic nurse plugging something into me, I can crank through a bunch of stuff with little interruption. So...back to work.