Mixed Results

We were hopeful the doctor visit today would clear me of the need for an RPLND surgery...which thankfully, it did. The tumor markers and CT scan came back in good shape and as desired. With an unexpected twist. I now have a lesion on my liver which is unlikely, and unexplained. The appearance is inconsistent with the "regular" spread of testicular cancer, and my tumor markers are normal. However, the fact that it showed up over the last ~90 days is of particular concern.
So what would've been good news has offered up the same numbness and sick feeling of my initial diagnosis...more unknowns, and this time, big question marks. There is the possibility that it is "nothing" and liver damage from the chemo. However, the doc hasn't seen that result before. Basically, nobody knows. Seeing the quote on my report that says "highly suspicious for hepatic metastases" makes me ill.
So...MRI has been ordered up. If results come back consistent for a tumor, I'll be off for a biopsy to see what I've got growing inside of me.
Ugh. I'll let everyone know more as I find out more.

Here it Grows!

Today is the first day I've detected stubble in about 2.5 months. It was a curious feeling to say the least, and dare I say, it appears my head has some five o'clock shadow brewing. It isn't exactly the full head of hair coming back in...appears to be a bit mottled and weird, but now I must determine whether to keep it or shave it. Big decisions in the Freeman household.

I have heard quite a bit about my hair growing back differently from the way it used to be...which I think would be a big influence on whether to let it all grow back in, or stay with the bald look until I get bored of shaving my head everyday.

Clearly, I could not leave this issue unresolved. I started calling around to determine what I might be in for. My oncologist was nice enough to refer me over to a specialist, who, believe it or not, can determine with a single strand of the new hair, what my new hair is going to look like. It wasn't cheap. The results are worth it though, truly a testament to modern technology. I went ahead and posted the picture here for your consideration. Take a look, then please participate in the poll on whether I should let it grow in.

The Right Thing To Say

Now having been a part of the cancer experience, I obviously have met with several other folks in varying stages, with varied prognoses, and varied outlooks. The infusion area for cancer offers a good environment for discussion, ie

"Hey, fancy port you've got there! That's some fancy-colored chemo you're taking in, does it burn or just elicit fits of vomiting?"

Most environments just don't over the same talking points. For example, we just recently heard that our neighbor has gotten cancer again, I relived the sick feeling quickly. I just saw her a little while ago and commiserated about the "experience". She looks wonderful after her (first round of) recovery--and since we had moved in not too long ago, it was the first time I'd seen her that way. Melissa and I were devastated to hear the news and responded the only way we know how. We're going to bring them food.

I quickly realized that this experience has brought me no closer to being competent to even say hello under these circumstances. There is absolutely nothing that can be said that makes someone feel better and there's nothing you can offer that makes any of it better. You're helpless, as is the recently diagnosed person. There are few circumstances in life that contain both people so completely and prevent either one from helping the other out of the mess. You stand there and stare, or you exchange niceties making both of you feel more awkward about the giant elephant in the room. The pastors that stopped by to talk with me were far more effective, but I take them out of our human category...both because, well, that's their calling and second because if any of the rest of us talked like that, we'd be a pastor.

So, generally, we're useless at this. After trying to think of why, it occurred to me that that's why God created dogs and cats. They don't say the wrong thing, they tilt their head appropriately when you discuss the issues with them and will curl up beside you (which is generally frowned upon when you're with neighbors).

So, I recommend that you bring any newly diagnosed person a puppy or kitten. You may have to bring it home with you afterward, but trust me, it'll make the conversation a lot easier. And at least someone goes home with a puppy or kitten. Bring one of each and everybody wins.

Go ahead. Tell me I'm wrong:

Treatment Is Its Own Patient

As I get further into the grind here, I've come to realize many things are not as you would expect.  At a certain point it became evident that my Treatment was its own animal, something that I needed to care for as much as anyone else.  Here's what I've learned:

Oncologists Manage Cancer. They do not manage patients.  I'm sure there are exceptions to the rule, and I don't think this is a bad thing. Dr. D described it best when he aptly stated "you don't need to like me, I just have to do my job well".  Pretty accurate, when you understand his job is to get rid of cancer. Not to be your best friend, not to manage any other illness, not really to figure out how well you're feeling on a day-to-day basis.  They look at data, CT scans and medical journals. You are a periodic visitor to what they are there to understand, you just happen to be the one carrying the goods they're paying attention to...get used to it, understand it, and use it to your advantage.  Oncologists will manage information flow to patients so they can, in turn, manage the cancer more effectively. They want to stop seeing you as soon as they can--it means they've done their job.

Nurses Manage Administration of Treatments. They do not manage cancer. The nurses are omnipresent and often extremely knowledgeable about your cancer. They are your front line for everything from nausea, to miscellaneous pain, to any other immediate situation. They generally make sure that to keep you well enough to receive the drugs/radiation/surgery that is prescribed. You'll find yourself in a world of confusion if you try to find out more about your cancer, prognosis or treatment plan if you ask a nurse. They are well intentioned, but they are not your Oncologist.  Asking them whether your AFP has dropped quickly enough should elicit a blank stare. If it does not, beware of the answer...it isn't from your doc.  

You Manage The Intersection of Cancer and Administration. Docs are busy, nurses are busy. Each of them are seeing at least 200 other people in your same situation, many have patient loads of >1,000. They will see your file for approx 2 mins before seeing you. You are not memorable, you are not their favorite, you are chart number 2359802785.  If there are things that the doctor has stated that need to happen that haven't...you better damn well follow-up yourself. They have too much to manage. This is especially problematic for what I'll call "secondary" work (i.e. getting a new drug, scheduling a CT, meetings with any other specialist). The doc will think of it, make a note, and pass it through a congested system. You better take a note too, and you better call and make sure everything is scheduled, humming and clicking as necessary.  You think you're getting a new IV drug? Check the label. Seriously. You know you need tumor markers drawn? Ask everyone, the person drawing the blood, the infusion lead, the nurse and double-check on your way out. You know that CT scan is supposed to happen? Better call to make sure.  My Oncologist said it best "You manage yourself and your treatment. Don't trust anyone."

More to come...

Happy New Year!

Seriously? I think we're about done with 2008. 

The last couple days have been ridiculous. I swear someone's just trying to break us, but alas, I have a solution that they haven't thought of. Read along dear reader, you're about to be surprised. 

...

So, into recovery here until we get the next round of markers, and other than a sick stomach everything was looking up. Then the random acts of ridiculousness start.

Tuesday, Dec 9. 08:11. Receive the call from Melissa that she'd just run over a brick on the highway on the way to work. Everything's okay, she's off to the side safely...but seriously, a brick?  Tires, chairs, even mattresses are the norm...a damn brick? So, one already new tire successfully destroyed. Can I replace the tire myself? Oh no, German engineering is to smart for that. 

Spare tire? Check. 

Jack? Check. 

Lug nut wrench? Check. 

Fancy little key to remove caps from lug nuts? Nope, you need one of those from the dealership.

If anyone can explain to me the logic of including all of the rest of the tools, but omitting the damn necessary tool to get started in the first place, you win $50.

So, drop off Melissa, wait by disabled car. Tow truck an hour later, dealership talk. 

New (expensive) tire $180.

Alignment $78.

Removal of bastardly little caps from lug nuts, $25.

Fact that they never actually removed the bastardly little caps (realized yesterday)...priceless.

Wednesday, Dec 10. 07:49. Home phone rings, Melissa again. I don't figure she's got on the highway yet, so hopeful another brick hasn't fallen into our lives.  Ah, much more creative this time! Bricks are boring...rectangular, heavy, all the same. Blah. However, pumpkins are much more exciting, especially when tossed from a car. They tend to explode, and I hear the seeds create a shower of effervescent joy for all who watch. Especially when said effervescent joy is hitting a mailbox. Our damn mailbox. 

"Look out the window" (editor's note: the last time this writer was asked to look out the window, a large tree had fallen, cutting down two power poles and locking us into our home surrounded by downed high-voltage lines). 

Editor pauses and thinks "this can't be good".  

Editor looks anyway.

One mailbox located about 10 yards from where it should be. Wooden stand still attached, though decidedly incapable of now supporting a 3 pound mailbox. Orange effervescent joy scattered around said mailbox. 

Of course, the first question that comes to mind is "where do you get a pumpkin in freakin December?!" I mean, if this happened in October it would've made some sense. The perps need to get seasonal updates to their weapons. Random acts of vandalism just aren't as funny if they're not seasonally relevant.

Got a feeling this wouldn't have happened if we had, you know, street lights (recall story about downed power poles...). But alas, Georgia Power will take care of those "as soon as possible". I'm holding my breath.

Raining too hard to replace the mailbox. Have a feeling that once I replace it I'll get a letter from the IRS delivered to my spiffy new box.

Thursday, Dec 11. 07:30. Writer turns off phones. Better safe than sorry.  Editor begins plotting...

Since 7:30 this morning I have pulled all negative news stories from the last 345 days. I googled it, and there are 24,175,480,172 negative news stories during that period.  Using a multivariate regression analysis I have clear correlative data that all of these negative items have exactly one thing in common. 2008. Try to dispute it. I dare you.

There is only one solution, one so grand, and so simple, the population has simply overlooked it.

The end of 2008.

As such, I declare the official end to 2008. From now till 2009, we are in the month of Freemanuary, year 200n. To reset your calendars, here are some key dates:

New Years Day. Freemanuary 1st, 200n. Today. Don't feel hungover? Well I do. So it counts.  The fact that I've felt hungover for the last 3 months is irrelevant.

Christmas Day. Freemanuary 15th, 200n. 

New Years Eve. Freemanuary 21st, 200n. To be celebrated at our house. Everyone's invited.

In summary, 200n will be full of food, drink and presents. 2008 was full of bricks, pumpkins, power lines and other miscellaneous bad stuff. I believe this will fix everything. Stay tuned.

Happy New Year!

Last Day of Chemo

So, here I go.  I haven't felt this mixed in a while. My body is just about to give up, not much is working right at this point. Hair is out, can't sleep well, can't eat well, can't drink well, nauseated, nothing internally wants to work anymore, vision is blurry and I'm shaky.  But, after today things turn the corner. So, if you've got a drink handy, raise it and take a sip. Because damn it, this is almost done.

As many of you have heard, my markers came back almost okay this time. HCG is under 2, desired = 0. AFP is at 10, again desired of 0. That puts me on the almost surveillance route towards avoiding surgery...hearby named the "aggressive surveillance" route. Basically, they'll test my blood more frequently to see if those markers start creeping back up. If so, we'll dig in and cut out all the remaining nonsense. While I'd prefer not to go there, there is some solace to having your cancer sitting in a pathologist's lab vs. in your body. Therefore, if it must be cut out, so it goes.

We get a 3 week break before the next round of markers.  So, we'll count our blessings headed into Christmas, a 3 week reprieve from treatment, and enjoy it fully with family and friends.  Whatever they end up being at that point, at least we'll be within range of finishing this battle. Nobody yet knows what else this war can bring...but for now, we'll be content with finishing this battle and taking some R&R. 

Hallmark (or American Greetings!) Cards

I was pretty overwhelmed by the responses to the post last week with the few things I've learned. I got quite a few emails, along with the comments, with a lot of great comments about what you guys learned from my ramblings. Maybe one of those silver linings...

Cards, emails, comments...anything is important. Yes, it is very hard to keep up with everyone and reply, but every bit of support is wonderful. I understand that my comments about not feeling/being strong or courageous seem like I don't want to hear it from you...but I'm not sure that's the case either. This is one of those journeys where it is the thought that counts, if your note is written on the back of a bar napkin, it is just as nice to get. Your card/email/comment is only a carrier for the fact that you wrote it in the first place. That's meaningful beyond the words you put down. However, I reserve the right to ridicule anything in the name of "laughter is the best medicine".

Almost through day 2 of round 4...the haze is beginning to fall around me, so I may not be the most talkative guy through the rest of the week. I'm likely off on a journey to the other side of the looking glass for the next bit...

Beginning Round 4

All plugged in as session 4 of 4 begins. Today was a rough start. A tree fell over next door, hit the power lines and snapped two power poles including the one directly in front of our house. Big bang, power out, cold house...and we couldn't leave. The power lines were draped across the front of our driveway, more lines across the road on one side, a large tree across the road on the other side. Ominous start to the week.  

I was looking for an excuse to skip chemo, and I think this was it.  However, we called in the favor with Andrew and were on our way to the hospital. 

So, late start, late finish, probably almost till 5pm. Wheeeee.

This week will be a big week.  From what we know, we'll get a much more clear picture on whether surgery is going to happen. Tumor markers should be back on Weds. If they're not normal (i.e. 0), I'll go for an "immediate" CT scan to check the size of the lymph nodes. Then we'd get to planning on the surgery, which could come a lot more quickly than we'd thought...and maybe more quickly than we'd hoped. If it comes to that, we'll have to see where we'll schedule it (maybe Indiana?)...so have the fun of working through insurance, timing, travel, etc.  Given my stellar timing so far (surgery on my birthday), I'm sure it'll get scheduled for the 24th or 26th, while we're planning to have everyone in town. 

Until then, we'll just keep praying that there's no surgery in our future and we get to go the surveillance route and sidestep the surgical option. However, whatever happens, happens...we'll just roll with the punches.