Andy

Spine Crunched

I had my osteopathy appointment today. I am of course totally exhausted now, but I think it will pay off pretty big for me in a day or two.

Weather Still Brutal, but Having Fun

I took all measures possible to avoid yesterday's difficulties, but despite it all I still was on track to crash and remain that way for the duration of the day. Fortunately, Amanda came by around 6 and I was able to ignore my health for the rest of the night. Darned helpful I tell you.

We didn't do an awful lot worth writing about I suppose, which is no surprise since I am rather limited in my options on the best of days, but it didn't matter particularly. With Amanda's help I was able to finally navigate the Forbidden Fortress or some such place in The Legend of Zelda: The Wind Waker, which is on loan from the Kenny Hopkins Institute. Kenny might be pleased to know he has an institute now.

I think the highlight of the evening came when Amanda took control of the remote and switched over to The Bachelor: Paris while I was getting water or something. I think I can say without hyperbole that the people on this show are the most insincere human beings ever to exist throughout the history of mankind. They even talk in halting voices in order to try to sell themselves on the drivel they're spewing at the camera. I was able to make many jokes at their expense over the course of the show, but I can't shake the feeling that I may have lost an important piece of my soul forever. I can only hope the jokes were worth it.

This Weather is Brutal

I'm still totally wiped out. Shifting weather always gets me. Shifting weather plus surgery gets me more. I made a mistake today in trying to sit up longer and missed my afternoon snack, too. I spent the rest of the night freezing in the reclining chair. I can't afford to make any mistakes, but I also don't really have the wherewithal to prevent them from happening over the course of an entire day or week.

... and now I'm going to have to resist the urge not to stay up late. That always happens when I go through one of these pointless-feeling days, because there is something within me that wants something to happen. I think it's part of all of us honestly, but it probably just doesn't show up in most people in ordinary situations. It's hard not to sit here, hands freezing, thinking about where I might be or how many people I might be able to help if I was well right now, having always gotten A's in school without ever studying for a test, just peaking the moment I got sick enough to shut me down. Now there's this, and if you've read anything over the past month you know what "this" is. It's harder to deal with "this" when what you have to hold onto on the other side is more sitting in the basement with cold hands, trying to figure out how to do something useful with tomorrow. Blows the mind sometimes.

I think I actually got through today pretty well considering the circumstances. I laughed it up good during my morning down-time listening to a podcast show called TWiT, courtesty of Mei's primo Care Package, Surgery Edition™. Playing Civ 4 with mom did help me kill a lot of time even though it did ultimately down me, and it was kinda neat to watch the closing ceremonies of the Olympics from start to finish. (I will admit to having strategically switched to distant channels during a few of the musical performances. That Canadian girl was terrible!) I also caught most of a neat Nature special on snow leopards. I didn't realize there were so few of them, but wasn't terribly surprised either. Public television can still do things with specials like these that could never happen in the regular free market television world. Nature documentaries on public TV don't have to be "cool" to draw a broader and more generic audience, and they possess a lot more depth and can convey a more truthful representation of a subject as a result.

All in all I'd say today was pretty useless, but at least I'm one day closer to test results. Oh, and Amanda, a friend of mine from late high school days, is coming by tomorrow, so that'll be fun.

Prayer Request

My cousin Cindy on my mother's side of the family just had her first chemotherapy treatment today for breast cancer. I think a few of us in this family must have had bum grandparents! Anyway, if you'd include her in your prayers I'd appreciate it. Thanks guys.

I was Wrong!

My country didn't completely fail me afterall... The US men's curling team won their bronze medal match with some excellent shot making down the stretch. In fact, they sealed the match with... wait for it...

THE HAMMER!

Yes, they call something in curling "the hammer."

In other news, I am against the wall today physically, in what you might call full zombie mode™. I would appreciate any distraction assistance possible, whether it be stopping in, calling, or getting some emails or comments going. When the weather changes rapidly as has been the case often this winter, I really get hit hard, and when you factor in surgery and the stress of my current health situation it can get pretty brutal. I've been fighting pretty hard though and I'm staying on top of it, but it's always good to get a lift from external sources.

Blood Tested

I had my blood re-checked this afternoon for the beta HCG marker as well as another that I think is just being double checked. I likely will not get any results from this until my appointment next Friday at Hopkins. That's a wait I could stand to avoid, but that's the way it goes.

My Country Failed Me... Sort of...

Well, my dreams were dashed today when both the US men's hockey and curling teams lost in the first round of elimination play. The curling team plays for the bronze tomorrow I believe, but hockey has another round yet to be played before medals enter into the equation.

I changed my strategy slightly today and was able to sit at the computer for a good bit longer. I'll just have to remember to get into what I have labeled the Reclining Command Center™ a good bit earlier after my morning routine than usual. I of course will be unable to test the viability of this approach tomorrow since I go in for the all-important blood draw, but I'll try it on Friday if things progress as planned. The itch from the support I had to wear through week 1 is still driving me insane, but at least now I have some Benadryl to treat it. I'd rather itch than hurt, that's for sure.

All in all a good day by recent standards.

A Dubious but Positive Milestone

I realized late today that I'm more distracted by pain in my back as opposed to pain around the surgical incision. I think that means things are progressing more or less as they should. I think I am running into a partial CFS block when it comes to the sitting up for long periods, but I look forward to a much-needed post-surgery osteopathic treatment next Tuesday which should go a long way towards fixing the back issue and righting the ship energy-wise too.

I enjoyed a reasonably packed day of Olympic coverage today and am hoping for key US wins in both hockey and curling tomorrow. I have really gotten into this curling thing. If I had a greater flexibility in terms of choosing activities in which I participate, I would seriously consider looking for a local place I could learn this sport. I think there might be some activity in Glen Burnie, much to my amazement.

Kimmie Rules

I just watched fellow Marylander Kimmie Meissner nail her figure skating short program in Torino. At least to a skating novice like me, her performance looked fantastic. Nice going Kimmie!

Zzzzzzzzz... What? Where am I?

A strange lethargy seemed to be hanging in the air today. It started normally enough, as I was able to return to my wake-up routine with only a few modifications for the third day in a row and with a little less pain to show for it. After that I sat at the keyboard here and the energy just got sapped out of me. Maybe I sat here a bit too long, or maybe today was just a weird one, but I've been kinda out of it since. Kevin stopped in for some high quality doing of nothing, and I think the lethargy field got him too. After a few rounds of vintage Pac-Man for the Gamecube we were both defeated. He ultimately passed out completely while I feebly watched the end of the Ice Dancing competition. It was nice to see our young American team win silver. Go Belbin and Agoszzzzzzzzzzz...

Kinda "Blah" Today

I got a nice Trager massage treatment and a nutritional IV this afternoon, which should provide a nice boost to my recovery efforts. Other than that I've just not felt great mentally. It's hard to explain exactly what it is like to go through the day-to-day when dealing with a potentially life-threatening illness combined with chronic fatigue. A lot of issues that bother me when I'm "off my guard" normally sort of have the run of things right now. I'm too tired to effectively fight back, but also too tired to adequately divert myself. I have been lucky to have visitors a fair number of days so far, but when I am just sitting here watching TV or staring at my computer screen realizing I should probably go back to watching TV, I cannot say that I know how I should be handling it all. I'm handling the immediate problems like a champion if I may toot my own horn for a moment, but it's the other stuff, the old lingering stuff, that I can't seem to stop as I normally would.

What I need is a string of good things to happen to me. That's really the trouble here. If I had something of substance to look back on favorably across any kind of recent time frame I'd be a-ok, but I just don't. Sure, I've had fun with friends, and that matters. I've had good support through this cancer issue to be sure. Unfortunately, having fun with friends doesn't really advance me anywhere past coming back home and hoping I'll have more fun with friends before they all move so far away I won't see them anymore. That's kinda how it all is right now. I'm not really depressed in the clinical sense, but I'm having to really scrap to get out of bouts of sadness, frustration and fear. Before my sonogram I was using everything I had to manufacture some luck for myself. This of course derailed it with a vengeance, and though it may be the worst time, it's not by any means the first. It's gone like this for 10 years or so now without anything remotely like a break.

Send me a break!

Sometimes It's the Little Things

After a week of itching and grunge, I was finally allowed to take a shower today. It was sweet I tell you. I was allergic to the material in the padding I was wearing so it might be a while for the hives to go away, but now I can finally return to a semblance of my wake-up routine that helps me get through days more like a regular human.

The Olympics are on more today as well after a week of rather poor NBC coverage. I was able to listen to and then watch the end of a really exciting biathlon finish during my morning routine, and the US men's hockey team is now embroiled in a fast-paced showdown with the Slovakian team. I don't know what's coming up later this evening, but I bet it'll be good too. I just love the Winter Olympics. For some reason I think I enjoy a larger section of the events, possibly because they are slightly more skill-based overall than in the summer games. I will admit that men's figure skating kind of weirds me out a little bit, but I really enjoy the many skiing events, the hockey, curling (who knew?), and even ice-dancing among others.

What impresses me most is the razor-thin margin for error in any top level competition, both for defining success with outright failure and for the differences in times between first and last place in a lot of the racing events. Take downhill skiing for instance. The athletes have to ride the line between wiping out on each and every turn in order to be competitive at all. Just watch their skis shaking, almost out of contact with the surface of the snow and you'll see what I mean. If a person bites too hard into the turns he or she can guarantee a safe run... at the cost of finishing last. That competitive risk, ever greater and more finely tuned as the skill level increases, resonates with me right to my core and is what makes athletics, and indeed competitions of most any kind, great and important as a part of human culture.

It doesn't hurt that most of the competitors are regular folks either.

Dressing Removed

I had my appointment today as planned with Dr. Rogers at Hopkins. I was scheduled for 3:00 and got in at about 4:30. The wait was pretty brutal given that I only sit up for short periods right now. We just walked in the door at about 6:20. Now for the update.

The dressing was removed as planned, which was essentially just a peeling of the plastic bandage. I could have done this part at home, but this gave Dr. Rogers the chance to look over the incision, which is healing normally. I also received a copy of the biopsy but of course had already read it and posted it here. I was hoping to learn more about this but I am coming out with exactly the same information with which I went in unfortunately. To review, I have testicular cancer of the seminoma type and only of that type.

So, what's next? I get followup bloodwork next Thursday and a CT scan on the 3rd of March to determine whether or not the relevant beta HCG marker is back to normal. The CT scan will be reviewed at a followup appointment on the same day. I am also being scheduled to see a radiation oncologist in the interim so that I can be briefed on the process of radiation therapy, which, if the marker has returned to normal, will progress thereafter for 2 to 3 weeks as often as every day or as few as several times per week. If my marker has not returned to normal we will then have to explore the possibility of chemotherapy or further surgery, as that would be an indication that the tumor had metastasized into an area like the lungs or brain.

My efforts to obtain even the limited information presented here could be likened to the pulling of teeth, so I have little sense of what is anticipated regarding my beta HCG level. I get a slight indication that a positive marker would at this time be unexpected, but at the same time the words really and very high have been used each time the marker level has been discussed. (For the record, my beta HCG level is 290. It should be undetectable.) It turned out that the tumor size was largely irrelevant, but I do not know about marker levels. If any of you have experience with this, please give me some indication. It's a frightening thing to have a really high marker indicated. I wish this guy was a bit more informative and up-front with his information, that's for sure.

I am totally out of gas, but I am also really proud of myself, because I had a moment just after the appointment that, to use a tired sports metaphor, you might call "gut check time," and I passed it at a time that I think almost everyone would fail. This surgery has me stretched thinner than a wire (my legs are shaking as I write this), and the appointments and attached waits are much akin to repeated blows to the abdomen while stretched out on a rack, but I am going to find enough to get through all of the followup treatments, even if that means I have to go to Hopkins every day. It's just going to happen. All of you are helping me through it.

Thank you.

It's Been a Week

I was able to push a little more today and walk around the yard and pier some. Everything I do involving sitting up straight and walking tires me out a ton still, but I'm trying to do a bit more each day anyway. Tomorrow is my appointment at Hopkins to have the dressing removed (it's ranch), so here's hoping I don't have to wait much before getting in for that.

If you're interested in reading the pathology file I received, click here. Maybe one of you can even explain it better, though I will likely find out everything I need to know tomorrow.

Double Dose of Good News

Well, the past hour has been rather eventful. Firstly and most importantly, Dr. Rowe (my CFS doc at Hopkins) got back to me with a preliminary report that suggests that the cancer may have been limited just to the right testis, which would mean it would be gone now. This is just an early indication and not thorough like the blood testing and CT scans will be, but it's a nice start.

Secondly, the blog has been updated to the latest version. This means everything is more stable now and we should have access to some more convenient features. I will get to investigating the new stuff and updating the pictures on the help page to match the new look when I am able, which won't be just yet. You can post and comment all you like from this point on. Ooh, I just found one handy new feature - you can assign multiple categories from a dropdown list just below the "Primary Category" section on the blog posting screen. That is a lot simpler than the old method, which I doubt any of you knew about anyway. Score one for confusion! Actually, the story of this upgrade is a really good one but I can't get into it here. If you are curious, send me an email and I'll explain.

Talk to you all soon.

Olympic Hockey = Great

I have never been a fan of the NHL at all, but I absolutely love hockey when it comes time for the winter Olympics. It's just a better game. The ice is wider, fighting is simply nonexistant, and the level of play is always at a fever pitch. I still wish the US team didn't always have so much contraversy surrounding it, but I'm still gonna watch.

On the health front, I'm still getting by. I'm maybe slightly better each day. Nothing crazy but it's not all that bad either. I've had visitors a lot of days and that has been great too. I go to get the dressing removed from the surgery wound on Friday, but I'm sure I'll be posting about that when the time comes. I'm worried about the wait, because it killed me the last time and now I'm having trouble sitting up for extended periods on top.

One more thing - you may not be able to post comments or full posts to the site over the next night or two. If that happens do not be surprised, and just try again the next day. It'll be back to spec, hopefully with some improvements, shortly.

Happy Valentine's Day, I guess

I think I have a little more flexibility and a little less pain at the start of today, but it still might be the hardest one so far due to it being a holiday and all. How do you stay positive when only one person in your entire life has ever agreed to go on a date with you, and then only for one day? How do you stay positive when your only selfish dream is to hold your wife and little girl in your arms regardless of how sick you are, but you haven't been on a date for ten years? How do you stay positive when you get turned down summarily and without the need for any consideration by anyone you ask, as if it was obvious to all that something was wrong with you?

How do I keep plugging along year after year after year without my dream contaminating my friendships or getting in the way of trying to recover? How do I ward against attaching feelings to the wrong things when they seem better than nothing at all? How do I stave off the fear that maybe today is one day too late, and that now I'll be lonely forever?

Something about this almost seems laughable. I got home from surgery and the first worries to penetrate my layer of resolve were not related to the potential severity of this cancer and what it could mean for the future. No, I was worried that I would not be able to keep searching for my love while I recovered, and more importantly that I would have to face this recovery without anyone, well, without her holding my hand. It seems to me that an unfulfilled dream can be an awful lot more like poison than panacea, but I don't think I can let go just the same.

You know, I never would have considered posting something like this a year ago. Maybe this recent health situation is partially responsible for my cavalier attitude about publishing my feelings for all to see. I mean, what's really the harm? I'm certainly not the only lonely person out there, even among those who read this, right? In all honesty, today will probably not be that bad all-told, but I'll have my moments to be sure. Who knows, maybe somebody who reads this will set me up with somebody (there's a first time for everything) and I'll look back on this post as a great decision years later.

Well, what are you waiting for? Get out there and start circulating photos and hyping my ruggedly handsome good looks and firefighter's physique!

Ooh, Curling

I'm doing about the same today as I have been. I seem to be in some physical pain here though, almost as if I'd been through some kind of surgery or something. Hehe. I'm currently checking out curling Olympic competition on one of the NBC satellite networks. It's kind of interesting, particularly when you have no better options available.

I continue to receive a ton of support from every possible angle, and once again I thank you for it. I've been worn down so much over the past ten years that it has gotten kinda easy to think I have been on my own and without a lot of hope. This situation has cleaned that thought out of my mind and then some.

Plugging Along

The last day and a half have been fairly uneventful. I'm still mainly just sitting in a recliner all day, occasionally talking to folks on the phone and eating. I hurt, but not excessively. My mind is still not entirely on track, so I have no particularly useful insights or witticisms to add today, but hopefully that will return over the course of the week.

I thank you all again for your support. Your calls and comments are really helping me feel great right now. I'd particularly like to thank my friend Mei-Ling for quietly taking off work and driving hours in order to visit on surgery day, and for outfitting me with everything I could possibly need in recovery short of scuba gear. You really know how to make a guy feel loved.

I'm Home

As most or all of you know, I got home today around 12:30 or so. I ate something and watched a few of the Star Treks that endlessly repeat on a couple of channels here, but have been half asleep for a lot of the time. I don't handle the whole digestion thing all that well yet due to the way they stop your digestive process during surgery. Today is a lot better than yesterday, and tonight will probably be better than now also. I don't know if I'm cured or not for a fairly long time, but it feels better mentally to know that I'm not carrying around something that could ultimately kill me, that's for sure.

Feel free to call or write. I can employ the headset on the phone. I may at times have to cut you off till later depending on what I've done recently, but don't let that worry you.

It's Official

We went in for blood-work and an appointment with urologist Craig Rogers today at 12:15. An hour or so later my blood was drawn and we got upstairs. After another three hours I got to see the doc, who had already scheduled me for surgery tomorrow morning. We finally got to the car at 5pm after more blood tests were completed, and I am writing this, exhausted, after basically just walking in the door.

The blood test results today confirmed that the tumor in my right testis is cancerous, though the type is yet to be determined officially. After an extremely brief examination, Dr. Rogers walked us through the steps of this process and outlined some details of the surgical procedure. An incision will be made above the affected region somewhere on the right of my groin and the cancerous testis will be removed through it. The procedure is often outpatient, but I think I'm going to be staying a day due to my CFS problems. I requested that consideration and I think it's likely to happen. If I stay over I'll probably be in the Marburg building, but I'm not certain of anything right now.

After the surgery, I'll go back in a week to have the dressing removed, and I won't know anything conclusive about whether or not the problem has spread until a month after the procedure, at which point I will have further blood-work to re-test the presence of the tumor marker(s). If my blood is clear, I'll just be observed. If not, I'll have to get chemotherapy and possibly other treatments and things unfold.

So, here's where I am...

The recovery rate for testicular cancer is about 99%, so that is good. That said, I am still extremely concerned about making a recovery from surgery, and further concerned by the prospect of treatments that, by their very nature, wear down the body even more. I am also angry that I had to go through a roughly five hour process today just to have my blood drawn and have a fairly brief consult. I feel I get absolutely no consideration as a person with CFS going through something like this, because no one at any point ever made any attempt to expedite the process, have me get the blood-work done at the same time as my other blood draws, or anything else. I further feel that this consult could have essentially taken place over the phone, legal requirements aside. The position in which I was placed today is much the same as requiring a wheelchair-bound patient to walk up 5 flights of steps to get testing done, then back down for the appointment, then back up again for more testing. I am as tired now I think as I was after the wedding I described on my blog in mid-October, and I have to go in for surgery tomorrow morning at 8:30am.

I was afraid I was going to just totally lose it coming out of Hopkins today, and I did briefly, but as I have found on countless prior occasions, God granted me just enough to get through. After my consultation I was sent back downstairs for what I assume amounts to pre-surgical blood testing, and my technician, a mostly bald, middle-aged African American man, was incredibly friendly and conversational at a time that it just had to happen. I would like to submit his name to the Hospital just to tell them how important it was, but I don't know if I can get that information or not. We talked a little about life, he brought up politics, and by the time I left I was much better equipped to handle the car ride home and the evening still ahead.

So, it's quarter of seven now as I wrap this up. Please pray for me. I am really scared about getting through the recovery from this surgery due to my energy level right now. When I get this tired I often get "regular sick" as I tend to call it, and that would be just horrendous at a time like this. Please pray that I'll get through it, and please also pray that this will be the end of it. Please also do what you can to keep me busy without a big energy requirement attached, as I have found it nigh-impossible to think about anything other than this since I received first word on Thursday. Somehow I am going to get through this surgery and come out shining. My will to live is not remotely reduced despite my physical condition, and I know I'll get just enough at each step to be ok.

I thank you all profusely for your comments over the past day or two. I have commented in return, but you might not realize that if you didn't check for yourself. You can call the house (410) 255-2308 for any information you need. Our answering machine is misleading and generic, but rest assured it is us. If you leave a number I'm sure my folks will get back to you as quickly as they are able.

Goodnight everybody.

Important Health News

Before you read any further, I ask you all to read this article, written by Christine Miserandino in 2003. She has done a beautiful job of describing a vague concept to most, and hope you can get some understanding from the reading. Now to the meat of this message. It is not particularly kid-friendly, so I have provided you with the option to continue reading or not at your discretion.

As you may or may not be aware, a few weeks ago, I visited a new doctor in Reston, VA to try a new treatment approach for Chronic Fatigue Syndrome and Neurally Mediated Hypotension. I received a routine physical as part of my visit, and was sent for a sonogram due to an enlarged right testis. On Thursday (the 2nd of February) I learned that the sonogram showed possible signs of testicular cancer. I must see a specialist this Wednesday the 8th and in all likelihood have it removed in short order. At that point they will complete a biopsy and I will learn more about what is going on.

For those of you interested in the technical, here is the report:

The right testicle is enlarged measuring approximately 7 x 4 x 4 cm and is near completely replaced by mass with heterogeneous predominantly hypoechoic echotexture and diffuse increased vascularity. Appearance is consistent with testicular neoplasm, probably seminoma. The right epididymis, left testicle and epididymis appeared normal.

Before I found out about all of this I was exhausted. I have been struggling to research and cook healthy recipes following a particular dietary regimen, trying to learn about occupational therapy, exploring how to properly fix the little house next door so that I might move in, pursuing copyright process for my card line, rebuilding my small-weight and stationary biking routines, and attempting to start driving again as well as getting a hobby involving about eight people off the ground. It is fair to say that I have used up all of my "spoons" for the last few months and then some, and now I have to face recovery from surgery and undoubtedly a whole battery of tests to follow.

But somehow I'm going to make it. Whenever something really nasty has come up in the past, I've always instinctively tapped into a sort of "emergency energy reserve," and I have no doubt I will do the same in this situation. While I face a sort of undefined fear for the future, I have no regrets or reservations about the way I have lived to date, and that helps immensely. At present I must simply wait until a final judgment is given, but once this happens I will pursue all necessary measures relentlessly as I do with everything else in my life. Faith and self-confidence make a powerful duo even in the worst of times.

So, if you don't mind, say a prayer for me tonight that I might have enough "spoons" in-hand to get through all of this ok, and possibly another that, after more comprehensive testing is complete, everything might turn out to be not such a big deal afterall.

Thanks everybody.

Movie Truths

Take a few minutes and check out 40 Things That Only Happen In Movies - Nostalgia Central. It's good for a laugh, and you can read it in stages if you're at work or otherwise busy.

Quote of the Day (1-2-06)

Even in this world, of course, it is the stupidest children who are the most childish and the stupidest grown-ups who are the most grown-up.

C.S. Lewis
The Silver Chair