All Clear

I got the great news on Wednesday night that the lesion is a cyst in my liver...though unlikely, not an immediate concern for cancer. So, it appears that's it for now. 

I haven't received good news over the last 4 months. I'm not quite sure what to do with it. I'm sure each of you will have advice, but I think celebration is one of those things that come laden with your own emotion--nobody can really tell you how to celebrate. Thankfully, I have the moment etched in my head where I told my wife, brother and sister-in-law in my kitchen. I can revisit their faces if I need to.  

I think this is a bit like waking up from a nightmare.  You don't celebrate waking up, and you have a bit of fear in your gut about the nightmare coming back once you close your eyes.  So, I'm not quite celebratory.  However, I am thankful...family, friends, strangers and doctors have been a part of this journey to get Melissa and me to this point. Countless thoughts and prayers said in silence without my ever knowing.  So, I will be thankful for the recovery and hopeful that the cancer doesn't return with each passing month.

I've got a few notes asking me how I found out about the cancer in the first place. I thought now would be a good time to revisit the beginning as I close out the visible battle (cancer is a bit like Iraq, the first few months include a bunch of noise and bloodshed...then you spend years trying to make sure it doesn't come back. While everyone else tires of the story, you still have to follow up on every lead with the possibility an insurgent cell is waiting around the corner).

So, how I found out.  I will cover the surgery and other "early" experiences a bit later. 

I can look back over the months leading up and say there were a few leading signs, none of which raised a red flag, but were odd nonetheless. Keep in mind these may or may not have been symptoms. They could have been something innocent, there's really no way to know.  

Early in the year I started getting night-sweats, I don't mean a bit uncomfortable, I mean hosed-down wet kind of night sweat. Read up on the appropriate sites, they said don't worry, it'll go away in a couple weeks...99% of the time it is nothing. It did go away in a few weeks...so, I assumed (maybe correctly), nothing.  Since then I've heard of many other similar patients having night sweats.

Early in August I got a few bouts of "itching"...maddening, skin crawling, no respite, itching. I could scratch all I wanted, all over my chest & back, and it would stay. Given the locality around my t-shirt, I assume detergent or some other allergy kicked it off. A benedryl later, it calmed enough to let me go back to whatever I was doing. It faded over the days, and went away. Again, nothing assumed. I haven't heard of this symptom in other patients.

Late in August I started getting fleeting pains, the kind only a guy can describe. When a guy gets "hit" in his, um, "parts" the pain is also in the lower abdominals...not just the parts. I started getting very fleeting pains inconsistently when I would sit down. I was fairly dismissive of the pain as I would notice it one day, then go 3-4 days of nothing.  A few weeks later I was coming into the house from working in the yard and got the same pain, a tad longer, but while I was just standing there--no sitting down to "explain it" this time. A point of realization here is that the fear of finding something is a powerful depressant on the activity of checking or acting on illness.  It continues to this day--I have to "force" myself to check regularly, in fear that I might find something. Anyway, as I said, the pain was immediately identifiable as something from "the boys".  I was going to shower anyway, so, very reluctantly, I checked them while in the shower.  

Not Right.  Without description...trust me, as a guy, you'd know something was not right. 

I immediately felt sick that night about what I'd found. I told Melissa, and though she was reassuring me, I knew this was bad. I got a name of a doc from my friend, and scheduled an appointment for Sept 10.  

The doc was good, the experience wasn't too awkward. He asked a lot of background questions then checked the boys. He changed immediately, body stiffened and face flat and emotionless. "Potentially an injury, give me a minute."  I got dressed and a nurse came in a few minutes later asking where I lived and told me to meet them around at the front desk. As I approached, the doc was behind the counter, "just make sure he get's seen today." As my mind raced, the doc came around the counter and said it was important that I was seen immediately.  I stammered the words out "I can't believe I didn't tell you, but my mom had breast cancer just earlier this year." He didn't blink, and said "that's not important right now, let's get you taken care of." He wrote a note in my file. Moments later I had directions to a urologist who was waiting to see me.

I had to cross by my house on the way to the urologist. I stopped in. I opened google on my home computer and typed in "testicular cancer survival rate". 

My urologist was very calming. We immediately struck up conversation on the work I do and his interest in helping the underserved. Sitting uncomfortably while he used an ultrasound to check down below, he continued the conversation easily. What communities, how many kids we'd helped, how we chose communities. He switched "sides" below. The conversation stopped, his back straightened up, his now expressionless face sprang inches closer to the computer screen. I had a moment to study his face. I could tell he knew immediately, he was now sorting out the details. This went on for a few minutes, he left, I got dressed. "I'm very concerned...we don't know yet...there's a possibility of...we have to take blood...no matter whether it is...or it is...we will operate immediately"

I called Melissa, I knew she couldn't pick up her phone in a meeting she was running. She may not even have her phone with her. 

I stood up in the office, by myself, and looked out an 11th story window onto "pill hill"--an amalgamation of hospitals and treatment areas all within a couple square miles, just a few minutes from my house. I told myself I'd have to get used to this place.

I had my blood drawn behind the counter. I heard a front desk lady say "but that's his birthday", the nurse finished drawing my blood and I took a step out from the room. She repeated her concern in front of her new audience. I made eye contact with my urologist, who held the same, calm, unflinching face. I looked at the front office coordinator and said what the urologist was thinking "I don't think that matters." And with that, I was placed on the surgery schedule for 9/12, my 31st birthday.

There was a remote possibility that my problem was an injury, not a tumor. Off to a second radiologist, down an elevator, across a hall. Called Melissa again. Again. Again. Her phone must be off. I text messaged a friend "in hospital, call Melissa and tell her to come home immediately" I stood alone in a corridor underneath the buildings for a minute as the realization of the news sunk in. I started shaking. I knew the next step already, surgery was coming, and I knew folks would want to be here. I called my mom "schedule a flight, surgery Friday morning, probably cancer" "What? How? Are they sure? I'll be there soon, should I call people?" "Don't know, don't know, don't know. Just call Mark for now."  Still shaking, I walked to the radiologist's office.  They admitted me and put on a wrist band. Sitting beside a hundred magazines, I read my wristband over and over, waiting for my appointment.

She assured me she'd done this many times, even a one or two in the last week. It was always an injury, nothing to be concerned about. 15 minutes later she stopped talking, her back straighted up, and her face approached the screen. She left and said she'd talk to my doctor and he'd call me on the phone in the room. 

"It isn't an injury. This doesn't change our plans for surgery." 

Melissa called.  "Remember the worst case scenario? This is it."  She found a way to leave the meeting.

I walked out of the room, the radiologist stood there in near-tears. She apologized for what she had said, she hugged me.  There was no need to say much else as I'm sure she won't make the same mistake again.

I went out to the parking lot and got in my car. The car had to be 100+ degrees. I sat there, shivering.  Eventually, I turned the key and started on the road to recovery.

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.