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.
Wednesday, October 15, 2008
Monday, October 13, 2008
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.
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.
Wednesday, October 8, 2008
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
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
Monday, October 6, 2008
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.
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.
Friday, October 3, 2008
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...
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...
Thursday, October 2, 2008
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.
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.
Wednesday, October 1, 2008
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.
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.
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