Back By Popular Demand

Surprisingly, people apparently read the nonsense I write here. And they apparently send me notes when I don't write for a while. I believe I know have more readers than the AJC, my advertising revenue is probably competitive.

So, as we head towards Thanksgiving, instead of doing the obvious and writing about things we should give thanks for, I thought I'd write about the lessons learned over 2 1/2 months with cancer.

1. On Strength & Courage: I was a bit mixed on writing this, but I think it is important--and something that other patients have shared to be the same reaction. Being told you have strength or courage is a tough thing to consume while you're fighting cancer (for some of us). See, we didn't choose this battle, and if we had any option whatsoever, we'd choose not to fight. We've ended up with a multiple choice question that says A) Undergo Treatment B) Die ...there looms firm the C) All of the Above, but we won't go there for now. A) is clearly the only option. We don't make that choice with any kind of strength or courage, we make that choice out of necessity. That being said, being diagnosed is kind of like being drafted. You don't want to go, there's the distinct possibility of dying, you're under someone else's control and while you're there, things are going to be terrible. That doesn't prevent the draftee from getting the medal of honor while he's a soldier, but at any moment he will do whatever possible to come home and return to his regular life. Both stories are about survival first, with the opportunity to serve others in a terrible situation. Many cancer survivors show their strength and courage long after they have taken care of the survival part in order to help others with the disease...those are the folks we both value the most. Right now I just feel like a draftee in the trenches, nothing too glamorous about that.
2. Survival does not necessarily mean a "perfect" outcome. My, and in many cases, our, knee jerk response to cancer is to evaluate a survival rate. In my case it is as good as it gets, about 95% within 5 years. It has taken me some time to realize that survival is only one component to evaluate--quality of life, and the difficulty of getting to "survival" are critical pieces to the survival puzzle. Complications from the disease, the chemo and surgery are likely and long-lasting. Anything from going deaf to never having kids, all on the possibility list, aren't a factor in that 95% which only confirms a beating heart. There's also the possible loss of kidney and/or liver function, which in the long term can definitely affect life expectancy. Survival doesn't mean "everything is going to be okay"--it means you're alive. Certainly reason to celebrate, but be careful not to assume it is the only thing the person cares about.
3. You don't have to be a "rock". We're all human here. For some reason people think they have to "look strong" around a patient, I'm not so sure that's true. There are few things more humbling than finding out someone is crying for you and scared with you. The day of my surgery where I had an entourage of the most beautiful women in the world (my brother included), seeing fear and tears in their eyes was okay and even reassuring. As cards, emails and messages pile up from people whom I've known well to haven't known at all, it helps to remind me that thankfully people aren't all wired like me...pretty much a non-emotional freak. It defies logic that people pray for people they don't know and send cards & gifts to people they barely know. Logically that reminds me that there's something else about us, something that I may not always "get", but that I can see exists.
4. It sucks. Encouraging thoughts only go so far, and I know that positive visualization is good. However, most of the time, you just want people to agree that the whole situation stinks. I'm sure some good will come of it, silver lining and all that...but hey, this sucks. Say it with me. Loud & Proud. It sucks. A lot. When you say it sucks, it helps both of us to share the experience a little more...and helps me to understand that you "get it".
5. Anxiety. For people who are used to managing things in their lives, cancer just tears apart a lot of your norms. Your schedule isn't yours, someone else tells you where to be, when to be there and why. Your future isn't yours, it is a blurry goal...something between what you'd planned on only a few months earlier and the looming worry that you won't get there as you hoped. This anxiety is what survivors talk about...long after the cards stop arriving, the prayers stop being said and the calls stop being made, the survivor is waiting on the next blood test to see if it has come back. That's the hard part, that's what leads people into depression. You just never know when or if it will find you again.
6. Knowledge is a double-edged sword. From what I can tell, Oncologists try to limit your scope of existence to the next battle...not overwhelming you with the war at large. So you learn bits and pieces about your situation as you walk through the field and they become relevant to you over the horizon. The stuff on the other side of your field of vision may kill you, but they don't tell you that right away. They want you to deal with today's battle. The Internet changes that, through other people's experiences, medical journals, etc. you can find out a lot about where you're about to tread...but you know that without knowledge of your specific situation. You don't know where your markers will be, or how big your lymph nodes will be, but you know what will happen if they're too high, or too big. So you think about it, and the complications of that possible battle. And all the scenarios...all before you know what will happen with you. Every test result, every blood test, etc. give you slight indicators and leave you hanging for more information. Everyone has their own breaking point with knowledge. Too much causes unnecessary worry and panic, too little causes poor decision making. It is a careful balance and I'm unsure anyone gets it right. Our fate isn't in our control, and there are many bits of information that will only cause additional anxiety. Sometimes it is okay when we would just rather not know.
7. Communication is hard. Especially for people like me who tend not to communicate and/or don't do it very well. There are quite a few people to reply to and thank for their notes, cookies, prayers and gifts. You're probably one of them. It is overwhelmingly difficult to contact everybody, our days would be consumed with it. Every note has been read, every card has been saved and every cookie shared (or eaten quickly to hide evidence). Close friends & family sometimes don't hear the whole story while a perfect stranger knows intimate details. That's the way this goes...it isn't that we don't want people to know, or that you're somehow less important. Every bit of generosity and thoughtfulness is cherished.
8. Cancer is different. Chemo is different. People are different. My surgery, chemo regimen and my personal reaction are all different from other similar cancer patients, and dramatically different from other types of cancer patients. Before I had cancer I didn't realize this. Cancer was cancer was cancer. Chemo was all the same. In fact, I read a journal about a women with breast cancer's chemo experience and assumed my chemo would be the same. I assumed I'd head in once a month or so, get chemo with friends for 3 hrs, feel crappy for about 12 hrs, then go on with life. Clearly that was not the case...I was very wrong. Her specific type of chemo was very different from mine and therefore her reaction was different from mine. Don't assume because you know this story you know anyone else's...or that you can predict their outcome and say "I knew a guy and he survived." Remember #2 & #4. Respect that their situation, no matter what, is very different from mine.
9. It is okay to ask questions. Even awkward or hard ones. From the folks I've talked to, cancer patients become increasingly pragmatic about their body, their diagnosis and the side effects. Family and friends watching on the sidelines often have questions about big things and small things related to cancer, chemo and the surgery. Believe me, we've gotten used to talking about it. You asking about my surgery isn't nearly as difficult to cope with as having several strangers fondle my genitals for hours trying to diagnose me--yes, gross, but as a point, pragmatic. Neither of us wanted to be there. But it is what it is. You asking about hair loss isn't as strange as looking at myself in the mirror. You asking about how scared I am isn't nearly as difficult as being as scared as I am. For guys my age this is especially relevant...how I found out, why I went to the doctor, how I felt are all very important things and things that guys don't talk about. Information that ultimately could help one of your friends or family self-diagnose a bit earlier and keep their quality of life significantly better through their treatment. Maybe they diagnose a few weeks earlier and avoid chemo. Ask the questions if you're curious. This cancer doubles in size every 14 days. Discovering and treating it two weeks earlier can mean the difference between having a family and not having a family.
10. Writing makes everything look different. Pictures capture a moment in time. Failed marriages can look great on film, you know, everyone is smiling. Nobody is there for a Kodak moment while you're yelling at each other. On the flip side, you tend to write or communicate at emotional highs & lows. Most days are mundane. You feel slightly sick, you're worried about the results of your next blood test and nothing new has happened. SNAFU. But when you feel really sick, or really good, man do you want to tell everyone! Again, having cancer is a bit like being drafted. 98% of the time you're waiting, marching, looking out for the enemy. Occasionally your existence is punctuated by extreme duress or happiness. You get used to being anxious and uncomfortable, you get used to only talking about the shitty situation you're in. The stories that are worth writing home about are the big ones...not the everyday drudgery, the rinse-wash-repeat story of survival. You guys are getting the AP pictures. Most days aren't photo worthy.

So there, a perfect 10. I'm sure I'll come up with some more valuable tidbits of information to share :)
Until then, I'm going to go eat turkey with family and talk about football, politics and economics. My wife will shake her head and ask me to change the topic.
Then next week I'll get this phase of the battle over with. Unsure if I have another battle to fight just over that horizon.

Wow. I've basically been asleep or sick for the last 6 days. The sickness was a lot more overwhelming this time, keeping me on meds since about Thursday last week. The side-effect is being completely knocked out for 4-6 hours at a time, so I have been on the couch/in-bed since that time. Mostly a haze of sickness disturbed by fleeting moments of sobriety.

The severity and longevity of the side-effects went up significantly. Whereas before I was almost back on my feet by Sunday/Monday, this time even yesterday was a fog. I finally got off the meds yesterday which made for a "regular" night and morning today.

Food isn't just tasteless, it is awful. There is no pleasure whatsoever in eating, missing flavors are replaced by weird bitter results. The food stays in my stomach for hours making me sick...never feels like it is fully "down" just sitting there in my throat for the "right" opportunity. On Sunday I had a sandwich for lunch that still felt like a brick in my stomach at 3 am. Ugh.

Well, at least it is nearing the end. Round 3 is done and I can walk around the house...although getting from one end to the other requires a short break in between. 4 weeks from now and this phase will be done, hopefully no additional surgery, but we're getting our heads prepared for it if need be. Melissa reminded me to be thankful that the first two rounds went so easily. And it is true, while this one stunk, it would've been a lot worse if I'd been down this round two prior times.

I'm sure I'm not making a whole lot of sense, so I'll cut the post at that. Time for a nap.

The Battle of Midway

Round 3 is definitely becoming more dicey than the previous rounds. Sickness has set in a lot earlier, and tends to linger...appetite and thirst are waning too. I'm still forcing down the water, fruit & veg do good too. No fun though, kind of leaves you in sea of fog. The rest of the week is looking like a bit of a chore, but I've got my dad here to carry me around, so I suppose the burden may be on him :)

A new set of tumor markers are back...10 days from the prior and still moving in the right direction. HCG b is 10 mIU/mL (was 39), AFP is 66 ng/mL (was 174). Both still high, but trending well. Doc had hoped we'd be in range of 0 by now, but no reason to panic, we'll measure up next time and hopefully be there. Trending tells me the HCG b should be down to about 1 next measurement, AFP down to 16. Hopefully we can defy the trends and hit the big 0.

Almost 3/4 of the way there!

Highs & Higher

Man, just had a stressful visit to the doctor. I finally received my first set of post-chemo tumor markers back...and they were elevated. AFP was 174 vs normal of 0-6...a mere 29x normal, and HCG (beta), 39 vs. 0-9, or 4x. No doc or nurse immediately available to interpret for me (my choice), so immediately I placed my heart in my throat and swallowed hard.

These are the moments when being good at math don't help you...variances are calculated all too quickly, and outside of winning the lottery, there are few times when something exceeds normal by 2,900% and anything good can come of it.

Back home with the news to scour for the one thing that matters...a benchmark. I searched for both my prior results (which I didn't have), and started my online search. Rarely do you find that Google fails you...but it did. While there are sites telling you what the markers are, and the oh-so-helpful "normal" range, (that 0-6 number again). Finally got on the horn with my urologist to get my old set of labs.

...holding breath...

HCG dropped from 1,607 to 39.

AFP dropped from 1,988 to 174.

...exhale...

Now those are good variances...98 & 91% respectively. I'm no doctor, it could still be bad...but hell, I'll enjoy my personal interpretation for now.

It is rumored that hair grows back in all different ways post-chemo. This picture, and related hair, have nothing to do with that. No, they are the result of having a jackass for a brother.

SNAFU

If you don't like military obscenities, you may want to avoid looking that up. It does appropriately describe hitting the halfway point though. Melissa is now used to the bald head, we were looking through pictures last night and she was shocked by "how long my hair was".

I'm getting more used to it also, though I miss shampoo. Using a block of soap on the noggin is somewhat unceremonial, it denies the head all the typical exciting cranial nourishment promised by the shampoo companies. In fact, this morning I reached for it this morning and thought, just for a second, I wonder if my scalp will be revitalized with some ginger root herby goodness? I held off, I'll save it for a time when my scalp is crying out for attention.

Outside of the baldness factor, the aches & pains, bruises, and mild sickness have just become the norm. Talking about cancer is still the routine, but no longer unsettling, you just get used to telling the story.

The cancer routine, events and emotions just take you to a new existance from which I think only politics and football can deliver you. "Regular" events still remind you that the world continues to march on...this week was the placement of a UF gator cheerleader costume on our back fence. After the football debacle on Saturday, our "backyard neighbor", a UF fan (we're working on modifying the community covenants to screen for this affliction prior to move-in), placed the effigy on our fence. The best part of the weekend came when I released our mutt into the backyard...who promptly ran right for the costume, barking like crazy the whole way, and tried to tear it off the fence. The first useful thing he's done since I got him. Though the game was a disappointment, it was a welcome trip back to the rest of the world...even the ridicule can be a nice respite.

The WBCs, platelets and other counts are all in good shape, and should remain so through the rest of the week...so we're on track for Round 3 next week. Can't say I'm looking forward to it, it just became regular, routine, rote. Rinse, wash, repeat.

So this is the way the next round begins, not with a bang but a whimper.