Andy

The Faces of CFS

I received a flier in the mail last week about a traveling photo exhibit about CFS. Here is the relevant info:

The Faces of Chronic Fatigue Syndrome will be displayed June 23 - 29 in the BodyLink Gallery of the Maryland Science Center (601 Light Street, Baltimore). The exhibit was photographed by famous fashion and celebrity photographer George Lange and features striking images and stories from CFS patients and health care professionals who treat the illness. It will include free brochures for visitors who want to know more about symptoms, diagnosis, and treatment options for CFS.

The photo exhibit is open to the public.

I know the Science Center isn't far away for some of you. Maybe you can pop in and take a look.

So My Folks Are Out of Town

This year their trip du jour is a month long trek with my aunt and uncle across the American northwest in search of birds. Normally they take a bus trip, but the bus trips aren't oriented toward birding so they've taken matters into their own hands.

It probably comes as no surprise to anyone who reads (or used to read) this site that I am not doing particularly well. If I was, you'd see a lot more posts. Everything now feels like it's moving too rapidly for me to keep up. My mind races over stupid things and I'm always fighting with morning anxiety. Presumably this is due to the med I took around this time last year, but in any case, it is really annoying and hard to deal with.

On the plus side, we decided to grab a bunch of meals at a place up the road called "Make and Take", so I think I may have a somewhat easier time managing my food supply. I have enough of these that I shouldn't have to plan much other than to get one out of the freezer and pick a vegetable to steam or pan-fry or whatever I want. I can handle this far more easily than when I have to prepare all the components.

Otherwise, I'm pretty much just playing a lot of Warcraft. I'm not feeling well enough to do much else even though I really want to be doing more. It's very frustrating. Ah well, at least the weather is nice.

If anyone wants anything from my parents' house, I put price tags on everything. Get it while it's hot!

What a Great Day!

I felt as lousy today as I have for the past four or so, rather unable to do much other than sit in a reclining chair and look at TV when my blood cooperated enough for my eyes to stay open. Still, I had made arrangements with my tennis pal Amy to start cooking again, and I wanted to give it a shot. The adrenaline that comes with social situations can give me some kick for a while, after all.

I had expressed interest in rehashing the first recipe we ever tried, which has already been discussed on this blog. It was great. We got the same fish from the same place, and with all the vegetables at their prime at this time of year, we really couldn't miss. Best meal ever... well, at least when combined with the fabulous ice cream cones from the Daily Scoop up the road from here. They make good ice cream to be sure, but their cones are the best I've ever had. Super fresh and with optional dark chocolate dip that doesn't reduce the crunch at all. That's some serious coneage™.

I also finished the final installment in the Harry Potter series today, which was the first novel I've been able to read in about two years. What a great book. I really feel like the last four books added so much more substance than the first three, and HP 7 added so many great lessons and inventive angles on life and death that I was not just satisfied, but touched on a meaningful level.

All in all, a great day despite my seriously poor health of late. I may pay tomorrow, but that's alright too.

Stop This Changing Weather!

The last 3 days I've been feeling terrible. The weather is shifting all over the place, and on top of that I'm not keeping my schedule in the order I would like. It has been a tough winter for that. On the plus side, I've been better off over the past few weeks than I was the month prior, and my appointment with the hematologist today revealed nothing unusual. My white blood cell count is low, but it seems nearly certain that this is the result of the radiation treatments I had to get last year.

Gnoella and Sprockette from World of Warcraft are advancing well, and both are now level 62. I will try to get some pictures up here soon.

I'm Still Alive, I Swear

Rumors of my death were greatly exaggerated. I am still not feeling particularly well, but I think I might be a bit better than at my last report. Obviously I'm still not active on the site, which is in part on account of my health, but also due to the class I'm taking and the physical therapy that I've been getting nearby for a few weeks. The center is only 3-4 miles from here, so I have been making the drive myself.

Oh, and mom and I got back into World of Warcraft a week or so ago, and joined a guild called The Holy Gnoman Empire. Good stuff.

Thanksgiving was nice as usual, in no small part because of Jim and Susanne's effort in organizing and cooking for the rest of us. I brought my friend Ann-Marie along this year since she didn't have another place to be, so it was doubly nice. Unfortunately, no snack turkeys were created this year due to lack of participants, but we will regroup next year, or possibly in a few weeks if someone can think of a snack craft project related to Christmas that we could use at the carol sing.

Stuff and Things

Since croquet-day I have been pretty busy, first with doctors' appointments, then with school and a nice visit from my Uncle Tom from California. He's here quite rarely, and we had a couple nice sit-around opportunities, which do not always happen.

I finished my first week of coursework for this 1 credit research class I'm taking online via UMUC. Given that I have been feeling absolutely horribly, it works out well that this week's work was quite easy. It took me a little time to figure out a few options here and there, but I'm finished with week 1 with 3 or 4 days yet to go before I have to worry about week 2 stuff.

... and yes, I have been feeling really horribly. I've had mind fog like you wouldn't believe with joint and back pain to match. On top of that I am experiencing a scary symptom that hopefully will turn out to be a side effect from the Lyrica I've been taking. The drug seemingly stopped working just as fall hit despite increasing the dosage from the initial 50mg all the way to 200mg, which is why my reporting on it has been missing on this blog. I have been reducing my dosage this week, and hopefully my problems will disappear soon after I stop taking it altogether. It is hard to even wait it out to be honest, but I'm managing.

This is the Answer

SR_Decon-Product.pdf (application/pdf Object)

I can't believe I didn't find it sooner. If I had, maybe none of my health problems would have appeared! At least now all of you have recourse for when you stop in to see me. Just bring this sucker with you and you'll be safe for sure.

I Expect My Pulitzer Any Day Now

The CFIDS Link published my Presence of Mind article today. Already the fame is piling on as I receive emails from other people with the condition, and I expect the fortune part to follow soon after.

... Ok, maybe there isn't fame or fortune, but it is really neat to get connected with other folks in similar circumstances. Hopefully this whole experience will open up a few new doors. My design website got a plug as well, which isn't hurting anything.

I will post more when the "Men with CFS" article is published. I am curious to see that one for sure.

Fame and Fortune, CFS-Style

I was contacted a few days ago by the editor for the CFIDS Chronicle about my Presence of Mind post from over a year ago. I had contacted her around the time I wrote the article, but she was new to the job and just dug out our prior emails after all this time. My post is going to be published in the CFIDS Link that should be emailed to subscribers on Monday, so that's pretty neat.

I was also interviewed for an upcoming article (not written by me) on men with CFS that will appear in the Chronicle. I thought it might be informative to post the questions and my answers on the ole blog here.

1. We know and hear much more about women with CFS. What do you think people should know about men with CFS? What should they understand about how the illness affects men’s lives?

   CFS takes away some of the essence of what it is to be a man. In order to cope with the illness, a man has to shelve things like competition, physicality in general, and the desire to provide for loved ones.

2. 1. Do you view your CFS experience as more similar to or distinct from that of women who have the illness?

      As with most things, some elements are similar while others are different. I don’t know any other men with CFS, so it is hard to say if my experience as a man is really typical or not. On the whole, I find there to be more similarities to talk about with the women I know with the condition than there are differences.

   2. What do you think are the greatest similarities?

      Many of the symptoms are similar, particularly those that pertain to energy level, orthostatic intolerance, or emotional condition.

   3. What do you think are the greatest differences?

      I believe men tend to tackle the “CFS problem” in a very different way than women. For instance, many women seem to have a harder time coping with the emotional stresses brought on by the illness, but are fantastic at researching and implementing treatment options for themselves. Men tend to focus more on the “regular life” type elements, such as finding ways to exercise, work, or make decisions, and can maintain more of an even keel emotionally even when the internal stresses are great, but leave the medical aspect in the hands of doctors for good or ill.

3. I’ve heard from some men that they have trouble identifying with the information they find on CFS because it often speaks from a female perspective or is covered in predominantly women’s magazines. Have you experienced this dynamic? If so, could you share your experience/views?

   I have experienced this, particularly with support. My method of coping is quite different from most if not all support group members I have encountered, which places me on the outside of such circles in some ways.

4. What are your toughest/sharpest symptoms of CFS? How do you deal with them?

   Brain fog and orthostatic intolerance are my two biggest. I have yet to find effective means of combating these issues.

5. If you had just 1 minute to convey to the world what it’s like to be a man with CFS… any male-specific dynamics or insight… what would you say?

   Well, everyone probably has a different perspective, but I would say that CFS for a man is a constant exercise in living and dealing with frustration. This is probably true for women as well, but for a man you have to be flexible in ways that go very much against the grain for what a man typically thinks, wants and feels.

6. From the recent blog postings I’ve seen, you seem to stay as active as you can. I imagine your life pre-CFS included many activities and independence that people traditionally associate with men. Could you please share a brief story (just a paragraph or so) illustrating how CFS has interfered with those activities?

   I’ve always loved tennis. I took lessons as a kid and played on my high school team until my health started taking a toll on my extracurricular activities. Despite that I have continued to play as much as I can, because I can somehow handle this type of activity better than many others, such as walking or running, and it also happens to be great therapy.

   So for a while I played somewhat competitively and that faded as I started losing dexterity and endurance. After that I served 100 or so balls by myself every day, and that started to get harder too because my muscles were getting tighter all the time. Now I am fortunate enough to have a tennis partner who will drive and play with me once a week, but we just hit in an extremely casual manner. I can’t serve at all anymore without hurting myself, and in any case my serve is weak and useless even when I try. I had a great serve before CFS.

   Don’t get me wrong, I value our court time greatly, but what I really want to be doing is testing my skill against an opponent of similar skill, serving and hitting as hard and as accurately as I can while keeping the strategy of the game in mind. I miss that competition. I miss being able to push myself to my “real” limits instead of having to find creative compromises in order to play at all.

7. What approach to your illness/wellness do you feel has benefited you the most? What’s the crux of how you currently manage your life with CFS?

   I am deeply Christian, and my faith makes all the difference. I faced a battle with cancer earlier this year in addition to all of my CFS problems. During this time I connected even more deeply with my Christian faith. Instead of folding or just scraping by, I have managed to create three websites and form a design company for myself that hopefully will give me a chance at earning some actual income beyond an SSDI check. Faith was and continues to be the answer.

8. Is there anything else you’d like to share on the subject?

   I have a question for the rest of you men with CFS out there. How do you handle dating and relationships with your illness? I think we men have a higher wall to climb on this issue on account of the cultural expectations generally placed on us. Have you been able to fight past those expectations successfully?

House of Death

Another mouse is now rotting between the walls of my bedroom. I knew it was coming, but I can't stop these things on my own unfortunately. That makes around 12 or more mice that have died thus far. Kinda freaks one out when it comes to feeling safe in this house. Is something in our house, like an odorless gas, killing these animals because they're small? What do I even do about it?

The weather shifted around 5 days ago and I am being hit hard. Hopefully my summer bubble will not totally burst, because I've really accomplished a lot over the past few months, and I would hate to see that fall apart. Wish me luck. I'm not going to stop pushing forward unless forced.

Dosage Increase

I am doubling the amount of Lyrica I take now, which is probably going to do some nasty things to me for a little while. Keep me in mind in your thoughts if you don't mind.

Update

Tiring but Good Day

I hung out with Amanda Bange all day yesterday. Fun stuff. I was pretty tired from my treatment the day before, so we passed on planned canoeing in favor of pier sitting. I also got an invite to eat at her folks' place, and was able to help her dad with some web design info. I told him to expect world peace by this afternoon, so hopefully that's working out for him. We rounded out the day with some Warcraft III team ladder games (we stink) and wound up at 1 and 3 on the night. We had to play people ranked way higher than us, so we expect to get some decent results eventually if we are able to try again.

So, long day, but totally worth it. I'm glad you came by, Amanda. Let's do it again soon.

Where is the Stench Coming From? I Can't See!

Man, talk about a rough couple of days! I already talked about the mouse part, and I might have continued with more details had not the power gone out. First it flashed on and off for random intervals 15 or so times, and then it finally died in the late afternoon yesterday.

That makes two days without my essential routine + feeling dirty nonstop + no US Open (which is the ultimate in tennis, one time a year) + horrid, unrelenting mouse stench!

After the hurricane of '03 that took out our power for a week, dad took some steps to hook up a generator to keep us in the clear. Unfortunately the generator is of poor quality and can only handle a few power issues at a time. We went without water of any sort in exchange for lighting that would wax and wane in intervals of a few seconds and interchangeable usage of the refrigerator/freezer and stove. Much like the mouse situation, this was all sort of hilarious in a morbid sort of way. At least we had a generator, right?

Now I have to hope that this whole circumstance won't significantly set me back. I'm going to progress as if it will not, and hope that I am not in error.

Lyrica Report, Day Two of Trial Two

Took my Lyrica again today. I felt weird again, but as was the case yesterday, not as weird as on the first go-round before the big trip. This could be for several reasons, but I won't be able to really pin that down for a while, if ever due to the randomness of my illness. I was able to work all day today, just like yesterday. Maybe the medicine is a component in that, maybe not. This summer's consistent weather has payed off for me with or without drugs, as I have written several times previously.

CFS Article

The September issue of O magazine contains an article about CFS. I understand that several high profile CFS sufferers are featured, including Michelle Akers, second highest leading scorer in women's soccer history. Given that O has a circulation of 16 and a quarter million readers, this could make for a very positive step in the advancement of chronic fatigue awareness in our country.

If you're in a bookstore, give it a look and let me know what you think.

Lyrica Redux

I started taking the Lyrica again today. I feel weird, and I'm freezing. These among other things make it hard to be excited about the coming days or weeks.

The Clock Strikes Midnight

My parents just walked in the door a few minutes ago, and the house officially has turned back into a pumpkin... or something. I am going to miss my independence, even if a lot of it was illusory. I am kinda happy to even be saying this given my less than stellar experiences during trips over the past few years.

This past week was very rough I must say, but I don't really blame the trip for that so much as a weather shift combined with a taxing x-ray and bloodwork appointment, some difficulties with interruptions during my morning routine the day following, and a few other issues. I have rough patches a-plenty when my parents are here, so I still am coming out of this feeling like I accomplished a little something.

Some assessments about the past month:

• I had roughly a week's worth of feeling really good over the past 3.5-4. I didn't have it all lumped together. I haven't had really any days of feeling good for a while, maybe years, so this was a big win for me.
• While I had a few logistical issues with organizing meals and ingredients for meals, on the whole I ate very well and was not stressed out about it. My problem spots mostly fit into the "things going bad before I could use them" area as opposed to the "I don't have enough supplies" area. Times when I had issues with the latter I was able to improvise rather painlessly.
• Over the 25 or so days of this trip, I was able to complete web updates for sites I maintain in a timely manner, but only on 2 of those days was I really able to work on my own projects, and for fairly limited spans of time.
• I decided to postpone my UMUC school enrollment largely on account of this trip combined with everything else that has happened this year. I am confident that this was the correct decision, and I hope that I can regroup for the spring semester.
• I did better on the days when people were not here for the most part. In the long term this would not hold true by virtue of my running out of supplies and ways to eat, keep the house in order, and so on, but given the supplies I had at the outset of this trip, I was, on average, able to expend less energy on the days where nothing was scheduled. I am not really factoring in the other benefits of visitors in this point, and those are significant.
• I need more tools to help me live alone for a long span of time. It would only take one thing to go wrong for many things to be destroyed, and there were many facets of life that I simply did not attempt to consider, like keeping up the lawn, making sure the water purification system was working, and so on. I discovered one or two helpful approaches during this trip, so that is a plus. I also need way more things to prepare food-wise in order to make the situation viable in the long-term.
• I really did have fun during a substantial portion of this trip time. I felt good about a lot of things about which I do not often get to feel good, and I was able to carry a positive mindset through many if not all of the harder situations as well.

I thank all of you who came down to help out over the course of this trip. Between people stopping by with grocery orders after work, people hanging out and bringing carry-out, and all the rest, I was able to manage pretty darned well without feeling an exhorbitant amount of pressure to survive. I even feel like I can plan the big (and long overdue) croquet event for next week if that suits people's schedules.

This Trip is Working Pretty Well

At about the 3 week point, I must say I'm feeling good. Great, really, by my standards. Yesterday I washed up some dishes, checked through a backlog of mail that had piled up over a few days of not feeling up to it, worked on my design website, cooked dinner (which took a while), and still had the wherewithal to gain about 10 levels with my healer paladin "Holy Cow" in a Diablo 2 user mod with a gamer friend of mine living in Kentucky. I am usually really hard pressed to have fun and work within the same day, because the pacing of the day gets ahead of me. I felt that pressure yesterday, but not enough to stop or hurt me ultimately. Were it not for my "no work on Sundays" rule, I would have likely done the same today, and in any case, today was a good day too. I feel good knowing that my "core attitude" is still in place, and that it takes very little for me to be content. Sometimes that can be hard to discern when I'm faced with months of punishing health problems.

I think the consistent weather has really been helping me out of late. Despite having to deal with the same old standing problems and aligntment issues, I'm bouncing back really well. It's been a long time coming I might add, because I haven't had a good summer for 3 years at least. I hope this good streak continues, and that I can move into the little house next door, sign up for school, and finish my sites before time itself ends. Either way, I'm gonna enjoy it while it lasts.

Full Day

I woke up today after a rather poor night's sleep. I think it impaired my judgment, because here's what I did today:

• Re-edited the sample pictures from my card line for my design website.
• Drove to Angel's and got groceries.
• Handled meals for myself.
• Attended a 2+ hour community meeting in place of my father.

I guess for most people that amounts to nothing, but for me, it's rather insane. Fitting, since I wrapped up the day a few minutes ago by watching Arsenic and Old Lace. I just hope I don't wake up dead tomorrow, because I have an appointment to keep. Ah well, you can't live unless you take some risks, right?

Chaaaaaarge!

I Remember Me

After a long time knowing about this CFS documentary and not checking it out, I finally remembered to order it from Netflix. It's pretty amazing and accurate. I really hope those of you who know me will find a way to rent it one way or another, whether from Netflix or by asking for it as a rental shop near you. I may see if I can buy a copy to send around to people as well.

State of the House Address

It's 473 New York Avenue... Wait a minute, that's not where I was going with this.

As my legion of adoring fans* might have noticed, I haven't posted for a few days. This is because I'm in the business of surviving right now, and said surviving has taken a physical toll on me. I've had some rather bad luck at the outset of the big trip that has put me in a rather poor physical state, but for whatever reason my confidence level is still higher than it has been during other long parental trips of previous years. I'm eating well and am working hard to space out my food selection so that I have adequate days of rest. With luck, the random bad luck element will fade away in the weeks to come, and I will be able to spend time working on my websites again.

So come on by! Maybe bring some carry-out with you and watch a movie or something. We'll have the run of the place. Steal what you want, as long as I don't use it. You know the drill.

Note: My legion of adoring fans may or may not consist of 3 occasional readers and a squirrel named Herb.

Let the Wild Parties Commence

My parents are officially away as of too-early o'clock this morning. If you know any wandering vagrants or drug dealers who need a place to crash, their room will be open through August 18th. Rent is cheap.

In other news, apple chips rock. So good. I had no idea.

Lyrica: Day Two

I took the med again this morning. I don't know if it really did anything to help me today, but it's really hard to tell because it seems to take away my ability to assess how I feel and why. I've had the same issues today as yesterday, and just got past a good hour + of reclining chair lethargy. I'm gonna have to shelf this medicine until after my folks trip in any case. I hope it can do something for me in a month.

A New Dilemma

I had an appointment on Thursday at Hopkins with Dr. Rowe, my first since being treated for cancer. The appointment was pretty routine (i.e. everything I reported was the same as last time and few new treatments were available), and I got a new medicine to try called Lyrica, a medicine designed to get overactive nerves under control. Being that this is a big problem for me, this drug carries with it some promise. On top of that, 5 out of 6 patients of Dr. Rowe's who've tried it have gained some level of improvement.

I took my first pill two nights ago just before bed, as directed. As has happened in the past with several sleep medicine trials, I woke up feeling as if I had not gotten more than a couple hours of sleep despite the fact that I had been technically asleep for at least 9, probably 10 hours. At the same time, my muscles were looser, which is pretty much what I've experienced before with the sleep meds.

So I emailed the doc and formulated a new plan. I skipped last night's dose and instead took it this morning. (Ultimately I'm supposed to take several pills throughout the day, morning through evening, so this wasn't incredibly off the beaten path.) Once the Lyrica kicked in, I started feeling disconnected and half asleep, but was still able to do things like create a mathematical formula for a layout I need for a website (algebra = useful), and play tennis with Amy. Actually, I played better than I probably have all this year and last, all the while feeling like my eyes might close at any moment or my body might collapse from overuse. On top of that, it didn't hurt to smile today, and I didn't feel all messed up from the tennis game after the fact. Ordinarily I wouldn't write a fairly complex blog post like this after a game, for example.

As if this wasn't enough to be perplexed over, my parents leave for their trip on Tuesday morning and my doc is out of the office the same day for two weeks. I'm going to have to do a fair amount of driving while they're gone, but I think it would be nuts to drive under the effects of this medicine. At the same time, it is fairly important that I figure out the impact and benefit of this medicine now, because I will be embarking on an entirely different line of CFS treatment with Dr. Shor in Virginia not long after my folks get back in a month or so.

So where are the answers here? Have any of you ever been on a medication like this one? Do you know if any of the side effects go away over time, or if they change with dosage changes? I've been in this kind of situation plenty of times before, but that still doesn't give me any answers.

Cinderella = Great

Apparently this was the first movie I ever saw. It's as good now as it was then. Probably better since I can remember it and all.

The only problem is that I seem to be getting eye cramps now as I write this. Well, not the eye itself (thank goodness), but that area just under the brow ridge. Talk about messed up. There seems to be some dizziness going on as well, though it is relatively minor compared to what some folks face on that front.

That reminds me, my parents' big Alaska cruise comes up near the end of the month. It's probably time to send the annual "lend me a hand" email...

Frustrated

I've been working really hard to try to establish myself as a web designer since my radiation treatments ended. I built myself a look for my own site and worked on some others as well in the first few weeks, but since then I have hit a wall of poor health, in this case more mentally than physically, but both are involved.

I've had to handle numerous updates for Nic's site, and yesterday I had to code the latest newsletter for my community's page. Whenever I have updates, that is all I can handle, and sometimes I have to wait a day or until 10pm to even attempt them despite the fact that they're just what you might call "grunt work", requiring no real creativity and little problem solving.

I decided to handle yesterday's newsletter update in the afternoon, because I felt like I needed to push a little bit in order to really hope to improve anything. The update ended up taking me an hour and a half, after which I felt like I had been run over by a bus. I felt slightly better after dinner and was able to make some minor modifications on one of my own projects, but not surprisingly, the bus caught up with me again today and decided to renew the tire marks. How am I supposed to create a web business of any kind when I can't even handle text updates to websites I've already built? I haven't even been able to think about writing the copy for my design website for over a month now, and my efforts to copyright my cards have stalled on account of the printshop I work with requiring micromanaging and constant reminders.

I'm not giving up by any means. I have decided that if I can try to accomplish something of any magnitude every day, maybe I can eventually carve out some form of living. It's a good thing I don't have to cook, clean, or balance finances. I had planned to head up a recreational roleplaying game that I've wanted to run for years now, but it's becoming clear that this is not going to be possible any time soon. I still want to try to take a class in the fall. We'll see. Unfortunately, no amount of resourcefulness seems to be enough to overcome my level of poor health. This latest situation has increased my confidence in my instincts regarding when I should push and when not, but has reduced it in terms of my general ability to handle life.

I have to be very careful not to think to the future too much at times like these. My rather extensive experience has shown me that I am entirely incapable of managing more than one thing at a time when I am able to manage even that one thing. When my parents are gone, well... that is why I have to be careful not to think to the future.

I'm staying mentally on top of everything by means of faith and religious study. I cannot know what my future holds whether experience makes it look bleak or not. I have food, shelter, family, friends, and most importantly, eternity on the horizon if I am able to live my life in a righteous way. Maybe God's plan for me does not include security. I have never entirely bought into the idea of believing that God necessarily provides for all of our dreams if we just pray hard enough. I believe that the proper course is to pray that God's will be realized, and to possess the necessary strength to carry it out as it pertains to each of us. Sure, I pray that I may achieve my personal dreams as well, but I only ask for those things conditionally. It is not for me to decide if the fulfillment of God's will includes my being healthy, married, or anything else.

I will always ask for the strength to endure what I must bear.

That is a prayer that will always be answered.

Aquariuming

Thanks to the behind the scenes work of one Joe Chiappa, today's celebratory aquarium trip was a big success. We were able to bring together people whom I know for all different reasons and combine them into one compatible group, I would say. I always enjoy doing that.

Today marks the first time I have ever used a wheelchair during an event to mitigate the orthostatic intolerance problems I perpetually endure. The wheelchair worked well, though the aquarium on a busy day like today was not well suited to its use. Despite Joe's creative wheeling, I was not able to see a fair number of exhibits or was only able to see them in a limited manner. I did get out and walk a few times, and that helped out a lot in the areas that involved stairs. Imagine that!

Using a wheelchair to get around with friends is an entirely different prospect from walking as normal. It turns out you don't really get to talk to people much unless they happen to be pushing you, and the persective is, of course, quite unusual when you're new to it. I think everyone should try it once just to understand it a little better.

We ate at the Cheesecake Factory as I hoped we would, because Pat Lenehan got there for us early to put our party on the waiting list. Thanks Pat!. We were there quite a long time, which was tiring but great, because that let us all chat and make up for the lost "friends time" (at least for me) experienced at the aquarium. We even met up with an internet friend of mine with similar health problems who I had yet to meet, along with her brother. I did my best to stay on top of conversations at two ends of the booth. I hope I did ok with that.

Mei also got me another gratuitous but greatly appreciated get-well gift. This time it was the latest Bryn Terfel cd, which I am listening to right now. It starts beautifully. It probably ends beautifully too, but I only just now got it playing. Thanks yet again, Mei.

So thanks everybody for coming out. I hope you had as much fun as I did. This wheelchair angle might open some new doors for fun activities in the future as well, and I'll know a little more about how to maximize its usefulness. I think I'll be doing another one of these gatherings with my family soon, with the Smithsonian Natural History Museum as the target. After that, it'll be (at last) the first croquet event of the summer. You're all invited to attend the Gwen Chiappa Hamster, Twinkie Johnson Kitty and Cancer Awareness Invitational Power Croquet Tournament (the GCHTJKCAIPCT for short) in a few weeks. I'll nail down specifics once I know more about the family trip. Until then, start donating prize money and don't stop until the event.

Pikmin Plus

I just turned off the Gamecube after successfully paying off the full 10,000 poko debt owed to creditors by Hocotate Freight, Captain Olimar's employer. At first I was a little concerned, because the game ended just as I left the cave in which I collected the last of my debt even though I had more caves to explore in other areas. My worry vanished quickly, however, as co-worker Louie fell out of the ship on the way back to Hocotate, prompting a return visit by Olimar and his boss. Now I can finish those caves and explore an all-new region that promises to be extra challenging. As an added bonus, my ship is now gold-plated! It's hard to beat that.

In pikless news, I've been pounding away on websites since my last update, making some decent progress, but having to fight for it pretty hard. This week has been more difficult for me for some reason. Mentally I'm not really functional till around 8pm, and physically, I'm in this new sort of perpetual pain from my waist down. It is frustrating and always slightly scary when something new crops up, but I plan to keep workin' and hope to feel better soon. I am definitely on top of it mentally, even if I don't get decent access till 8. :)

I am looking forward to the big aquarium trip with friends this coming Saturday. Don't forget to buy your tickets in advance, and grab the version that gives you access to the dolphin show unless for some reason you would rather wander aimlessly while the rest of us check out the dolphins. I have nothing against aimless wandering, mind you. Go nuts if ya want.

If you read this and didn't get an email but want to attend, just send me a comment or email and we'll remedy the error.

Busy Weekend

Though I have been rather complacent about updating my blog here, a lot went on this weekend in comparison with the usually quiet world-o'-Mosmiller. Collin and Amanda were nice enough to help me out with an excuse to grab food (and of course watch Passions) on Friday, Dana's graduation party was on Saturday, and my aunt and uncle from Ohio arrived with my folks on Sunday. Yesterday Kevin stopped over and stayed late. I'm paying for it now, but it was worth it for sure. Today, Joe will be stopping in for a few hours later this evening, just before heading off to Hawaii for a week or two. Ah, the high life.

In health news, a lot of people have been asking me how I'm doing after my treatments and all, and I have been a little confused regarding what to say. It has been so long since I've experienced any kind of normalcy that my scale is skewed. On the one hand, I am making steady progress on my design website, and have worked every day of late on that. On the other, I feel pressed most of the time, like something might crack. I think that means that I am doing well, but with a risk-factor.

This whole health thing brings up an interesting topic that I have considered at length over the years... How do I address people when they ask how I'm doing, and how do I make sure that I can cover all of the health bases without going overboard? My tack has been to say something like, "getting by," or, "I'm doing ok," when asked, and to try to get a chair with arms staked out and to make sure someone in charge knows why, but maybe that places me in a more negative light than is in fact accurate. I hope that my demeanor takes care of everything for me, but I don't know. What do you think? Do I come across too negatively?

It has been a long evolution to get to this point. For the first few years, I just sucked everything up as if everything was normal, and paid for it horribly. Maybe there have been points where I've gone too far in the other direction too, but it's hard to figure out. Hopefully I am close to a balanced approach now. Let me know what you think.

Big Surprise Today

Today was chugging along and kinda blah until I opened an airmailed, handwritten letter around 4:00 from none other than Bryn Terfel, world-renowned operatic baritone, regarding my battle with illness over the past few months. Here is an excerpt:

Dear Andy,

Just a little note in the middle of my rather hectic "Wagner" year to hope and pray that you are holding up after your recent bout of illness. I hope a letter from the mountains of Wales will remind you of what music and its powers mean to so many of us whatever the complications of life.

Mr. Terfel continued with some detail about his latest engagement, tied it to the above quoted material with a well thought out comparison, and ended with a quote. He is clearly an intelligent and caring person to have taken the time to do something like this for a person he will likely never meet. I would like to take this opportunity to thank Bryn and his agent, Doreen O'Neil, for making such a wonderful gesture.

... but how did he even know about me in the first place?

That would be because of the incredibly creative and persistent Mei-Ling Johnson, who has of course received mention on this site any number of times for her continued efforts on my behalf.

Thank you, Mei, for setting this once in a lifetime occurrence in motion back in February when all of this cancer news hit. I don't think it's possible that I could ever have a better friend than you.

Doins a-Transpirin'

Let's see, since my last update, the weather has become, well... perfect. I'm still trying to walk around the circle every day, and am looking for more excuses to be outside. It's a little tough when you factor in the recouperation process. Come on down and give me an excuse!

We've had numerous unusual bird sightings recently, including scarlet tanagers, tree swallows, rose-breasted grosebeaks, and bluebirds. I also reported a pie-billed whooping sparrow, but nobody believed me. The swallows and bluebirds are actually nesting here, so we'll be seeing plenty of them barring some sort of bird disaster.

I'm trying to get back into web design as well, and am working on improving Nic Kipke's campaign website. I'm happy with the changes, but can't publish them until I hammer out an inexplicable bug in, you guessed it, Internet Explorer. I may have to settle slightly in order to account for it. I don't like settling.

In movie news, I have recently returned E.T. and Chocolat, which both receive 18 stars out of 5. I'm gearing up for Doctor Zhivago in a few minutes I think.

Watching movies in the afternoon might be ideal for me, because it's my worst time of day. That kills the rough time for me with minimal effort and allows me to use the later evening period more productively. The only problem is that it's beautiful outside, but I can't expect perfection here. At least I can use the screen door.

Cancer Retrospective

Coming out of this cancer ordeal, there are a few ideas that have gone through my head over the course of it that I find worth sharing with you.

• I was only able to say, "I have cancer," with certainty for half of one day. Sure, there was a lead-in period where I was fairly sure, and a post-operative period where I might not be clean, but trust me when I say that "almost" is not at all the same thing as "for sure", and half a day is not much time for any of it to sink in.
• If I had not been diagnosed and treated, I would probably not be here in another 10 years
• I now have or have had the two most emasculating illnesses that I, in my meager experience, know to exist.

Days Off Do Me Good

As you can see, I haven't posted for a couple days. I figure the time of daily posting has come to an end, at least for a time. My health status is relatively unchanged at this point. My upset stomach is slightly less upset with each passing day. The weather shift is still getting me, but at least the past few days have been consistent. That is big.

I've watched a few movies over the past few days, and since I'm too tired to write out reviews at this point, I will give them a short-form treatment...

Let's see... Casablanca is a great movie for its time but is slightly lacking given my modern movie sensibilities. Citizen Kane - same deal. The Client is great, and Fever Pitch is mediocre. Finally, Nausicaa of the Valley of the Wind is pretty good, but not as good as Spirited Away, which was reviewed a short time ago in more detail.

Now where's my Pulitzer?

Today is a Stinker

Whew, today is not going well for me in the health department. Maybe I worked too hard on web content (not on this site) yesterday. I think the more likely culprit is the temperature drop, though. Another 10 degree shift in a succession of them. Well, it's just one day. I'll have to find some ways to kill time that don't overload my mind or body.

Onward and Upward

Today ended better than it started, which is not new to me particularly. I kept everything extremly low-key and look forward to my first 3rd day after radiation since this whole thing began. We shall see if tomorrow will bring any noticeable improvement, particularly in the nausea department.

I'm Realigned

I had my biweekly osteopathy appointment today, which was fortunately timed right at the end of all of this radiation stuff. I am quite tired of course, but hopefully this will help right the ship over the next week.

I am disappointed that I have not displayed any super powers yet. I have a mild case of ESP going, though. Maybe that's just the beginning, or maybe I have to get a Professor X-style wheelchair before it all kicks in. If we do this aquarium/museum thing as planned, we might just find out!

Zap x20

There was some waiting involved in today's treatment, but now I am done for good and planning my retreat into the wilderness, never to visit a health care facility again! Ha ha! I would like to thank Dr. Oh, nurses Candy and Trish, and all seven members of the radiation staff who did the actual zapping each day.

I expect it will take a while for me to get back to "normal", but that will give us the time to plan the trips I discussed some time ago. Designated coordinators, start your planning... Now!

It's Almost Over

As has been our system over the past month, I got an IV and massage treatment today, the last day before my last radiation treatment. I also got out to Kevin's place for a birthday party he threw for his fiancée, Debra. I won't know till tomorrow if I got away with this one or not, but hopefully I will.

You may have noticed how I have become less talkative over the past couple of weeks. I've already gone through the emotion phase and the clear mind phase. I think this is the "dead" phase. I'm fairly well out of gas, so odds are you won't be getting much exciting content out of me for a while. That is assuming I ever had any exciting content on this site, of course. Maybe I should have written these radiation logs in a cliff-hanger format...

Tired and Bored

Yes, it's the double threat! I'm happy to not have to get treated today, but my body hasn't figured that out so much. I have a couple of movies from Netflix to pass the time, but for some reason don't want to watch them. I must be trouble.

Zap x19

Whew, treatment #19 is out of the way. I had to wait a fair bit beforehand because the radiation folks were having trouble with getting pictures to turn out properly on a woman who went in ahead of me. I feel sorry for her. She must have had to keep her arms over her head in the little mold thing for a good half hour or hour. I'm surprised they didn't fall off.

I'm home now (obviously), and really tired and nauseous. Fortunately I get two days off, and then go back for just 1 more treatment. At that point I think I will move to the wilderness and never see another medical facility as long as I live.

Zap x18

Today was fairly routine timewise, and though I still feel rather lousy, I am doing better than yesterday. I think I will be up to a late afternoon walk around the circle. It's too nice out not to at least try, and the trees are just stunning right now.

Zap x17

Today was fast, but wow am I sick. 3 to go.

Zap x16

Contrary to yesterday's waitstravaganza, I was treated as soon as I walked in the door today. Most of my time was actually spent on the table, because they had trouble lining me up properly. I feel like I could help them, but they're not so much wanting to hear from me during that process. Regardless, I was in and back out in 15 minutes today.

Unfortunately, I am not reaping the benefits of the short wait in terms of how I feel. My nausea and fatigue are both pretty hefty right now. It's probably the Easter backlash doing most of that work still. Netflix isn't coming through for me right now, either. I haven't had a disc for a while now. I hope something didn't get lost in the mail.

Complain Complain

I think I'm having more skin trouble from the magic marker than from the radiation treatments. You'd think there would be some kind of skin-safe version that would yet remain reasonably permanent. If there is one, Tate doesn't have it.

We got back an insurance claim today. Carefirst paid $0 for one of my appointments with the urologist. I don't know if they've paid anything else or not, but I think this says worlds about our health care experience. If cancer isn't good enough, maybe I should start inventing new health problems to get their attention. I've been thinking for years that I might have whooping cholera...

Ok, I'm done complaining. I think I'll watch some baseball, and 24 in a few minutes. I hope this week's episode isn't in full soap opera mode. Ok, now I'm done complaining.

Zap x15

Whew, today was a long one. Despite calling ahead to check the schedule not 25 minutes before my appointment, I arrived to a 3 or 4 person backup and didn't get in for at least a half hour. Monday being "doctor day", I had to wait longer on the other side of my treatment, and didn't get out the door till 4pm. I think one lady had an emergency situation that threw off the timing of the whole operation. I hope she's ok.

Feel free to call up/stop in/email... you know the drill. I am without any Netflix movies today, and am out of energy as well. Here's an idea to get you started: Leave a comment and talk about what you did over the Easter holiday? How many people were involved in your celebration (or non-celebration maybe), and what did you do?

Uneventful Day

The weather shift set me back a little bit today, but all went well aside from that, I'd say. For reasons unknown, my being sick to my stomach has mitigated my orthostatic intolerance slightly, so I was able to walk around the circle again, and spend some time out on the pier as well. I'm missing the tennis courts, but will hopefully get back on them in a few weeks or a month, depending on how recovery goes.

I have many movies to choose from tonight, but have latched onto The Ten Commandments, which should only take 7 hours to air with commercial breaks factored in. Besides, that Charlton Heston is dreamy. :)

Zap x14

I think I am adapting to the fatigue component of my treatments. The last two weeks, Friday was brutal, but this one seems not all that different than the other days of the week. We picked up a snowball on the way home this time so that I might take in my weekly allotment of sugars and essential food colorings.

Our nurse friend who does the IV and massage work is coming by in a short time. That seems like a good way to start the radiation-free weekend, especially with Easter right around the corner.

Zap x13

My appointment today, while not quite as fast as yesterday, was still a pretty painless affair. I had time to read about one paragraph in my book before being taken back. Nothing wrong with that.

It sure is beautiful outside. If I had a recliner-type chair out there I'd spend much of my day on the pier I suspect, but I will have to settle for a shorter stint a little later in the afternoon or evening. As for the rest of you, take the opportunity to enjoy this beautiful day. Take a few breaths and appreciate what you have. I'll join you.

Zap x12

I was in and out the door today as fast as I think is possible. The same lady that wanted to blame me for yesterday lectured me a bit more today about being on time, which was irksome considering I was one whole minute late before being waylaid by the nurse to see if everything was going smoothly. That conversation must have lasted at least another one minute. Yeesh. Still, treatment was as painless as possible today. I'm not gonna let this minor nuisance blind me to that fact.

As for the rest of the day, I do believe I will watch some more Battlestar, maybe task my Pikmin to retrieve some more valuable objects, and possibly take a walk or sit outside for a spell. I think I'll start off by getting angry at the latest in the political arena, though.

Zap x11

My experience at Tate today was less than stellar. Given my problems recently with long waits, I called ahead to see if they were on schedule. I was informed that they were in fact a half hour behind, so I went in a half hour later than usual. Once I arrived, I had to wait quite a while for an older woman to be treated first, and once I got into the room, I was chided for being late and informed that, had I arrived on time, I would have been taken right back. When I informed the crew that I had called ahead and been told to come late, one of them said, "don't call ahead," despite the fact that everyone has told me to do exactly that. Somewhere along the line, someone at Tate dropped the ball, and I took the blame. Not happy. I stood up for myself, but I now have no clue what procedure is actually the correct one.

I had originally planned to follow through on a new blood work order tomorrow after my treatment, but decided to get it done today given the fact that my schedule was already thrown. I was lost in the shuffle there for about a half hour before someone realized I had signed in and was waiting.

Once I was out of there things went more or less as expected. I got my osteopathic treatment in Annapolis and grabbed some steak at the nearby Outback before coming home. I do believe I shall pop in some Battlestar Galactica to finish out the evening.

Long One Ahead

I have both radiation and osteopathic therapies coming today, which means I won't be back here writing about either until probably 9pm. If you're reading, say a little prayer if you would to help me get through it all ok. See you on the other side.

Zap x10

Today was a long one. My appointment was scheduled for 1:45. I got out of there at 3:40. Apparently the radiation team had to move someone ahead in order to compensate for another treatment that person had just received or something. Monday is also "doctor day" as I have previously mentioned, so that kept me in the building longer as well.

The bottom line is that I am extremely tired. On the positive side of things, I found out today that I have to get the original 20 treatments, not 25 as I had assumed from the order to treat for 5 weeks. Apparently Dr. Oh was factoring in my starting on a Tuesday, thus requiring bleed-over into a 5th week. That means I'm at the half way mark today. Woo!

Blah

I don't feel so well today, but it's because of sleep issues, not radiation side effects. It happens sometimes. On the bright side, I was able to take a walk (and a few pictures) around 6 without incident.

The mail failed me this weekend so I was Netflixless. I played the extras from the last Battlestar Galactica disc that's still here, but they were rather bland and uninteresting, sorta like watching a promotional ad for the show. I keep forgetting I have Pikmin 2 sitting in the Gamecube not 2 feet away. I'll have to get back to that.

'Nother Relaxing Day

Today has been a really good one. From a health perspective, I have experienced a significant drop-off in nausea today, which is a welcome reprieve, and am otherwise about the same.

Even better, Amanda Olear (formerly Lesher for those who would know) dropped by for a couple of hours in the afternoon, and we were able to catch up on what amounts to about 10 years of info. Score one for the website on this one. Amanda's sister Kim happened upon it and passed info about my current health issues along, which led to a comment and email contact. In any case, it was great to see you today, Amanda. I look forward to the possibility of a long-lasting renewed friendship as well as the opportunity to infuse croquet and similar events with fresh blood. :)

Amanda headed out as Rhonda Kidd (the Trager massage and IV-giver) came in, bringing with her a full carry-out Roadhouse steak dinner for me to eat after treatment. Yep, that's the kind of people we're dealing with here, folks. Can't beat that. Oh, I should mention that the folks are out of town today seeing a Broadway play. I'm sure dad is thrilled. Hehe. I am thinking of selling the house while they're gone.

Now I'm stuffed with meat and fully content to while away the rest of the day from my Reclining Command Center™. I'm out of movies for the weekend unfortunately, but baseball season has resumed and the Orioles can't be declared out of the penant race for at least a couple of months yet. Feel free to give me a buzz to check in and help me pass the time. Stop in if ya want. It's all good.

Zap x9

Today's zapping marks the completion of one-third of my total radiation treatment plan. Fridays are definitely the worst in the week, but I can look forward to two days off to reset the clock a little bit. As for right now, I think I'll put on a Battlestar Galactica episode and forget I'm alive.

Zap x8

There were a few people in front of me today, so my treatment didn't happen till about 2:00. While I would of course prefer to be in and out of there, I did get the chance to a few more chapters of Mere Christianity, a C.S. Lewis classic. Go buy this book if you don't have it.

I am finding that I feel a fair bit worse just after treatments now. It kind of crept up on me, but it's definitely the case. I've been muddling through well enough, though, and am in generally good spirits. My mind is clearer than it often is, which is almost the entire ballgame with mood for me.

Zap x7

Today's 1:45 treatment took no time at all. I'm a little shaky right now but if every day goes as quickly as today, this time slot will be great by all accounts. I also met up very briefly with fellow Chesapeake High School grad Joe Lex, who works up at North Arundel very near where I get treated daily. All we were able to do was shake hands and say hello today, but I'm sure we'll figure out something more substantial before too long.

On another note, fellow Vocal Ensemble member Brandi Burkhardt just landed a role on the daily soap, Passions. How fun is that? I am not exactly a soap opera watcher, but I will have to check out a few of these once she appears on screen on the 21st of this month.

Zap x6

As promised, today was indeed "picture day", as long as by "picture" you mean "x-ray." My wait today was the shortest since my second time out, though of course the x-rays took a bit of time to complete once I was in the room. Tomorrow I go in at 1:45, which could be tricky for me given my complicated morning routine.

I had to deal with a little bit of tachycardia before heading in, which just goes to show that I'm probably as tired as I'm claiming to be. I had to do some tedious and unexpected website repair in order solve some hidden issues with a few of the category and monthly archives, so that didn't help either. The site is now completely fixed as far as I can tell, so that's good. I'm gonna add some new CSS to pretty up long quotes on the site in a minute or three, and I'll probably refrain from working too hard for the rest of the night.

On a related note, I had initially titled this post "Zap⁶", but the "sup" (superscript) tag is not allowed within a title. Do any of you know how to get around this restriction?

Zap Zap Zap Zap Zap

I have a week's worth of radiation treatments behind me now. Today involved some, but not excessive, waiting, and a followup checkup with Dr. Oh just afterwards. Apparently Monday is "Dr. day", and Tuesday is "picture day" every week.

Dad didn't have time to put on the planned pork roast after that, so we ate at Lista's before coming home. I think it's weird that I felt that I could handle Mexican food better than other available options, but that's how it happened. I went with the Mole Pablano again, figuring that this might not be the best time to be experimenting with new dishes, and was not disappointed.

All in all, a tiring but reasonable day. Think I'll cap it off with some combination 24 and NCAA basketball finals action. :)

Beautiful and Relaxing Day

I got another nutritional IV and Trager massage treatment today, finished up the rest of the Battlestar Galactica miniseries, walked around outside a little, and sat on the pier. My cold tolerance has been sapped away over the past few years, which has prevented me from visiting my favorite spot as often as I would like. I am looking forward to a great many more pier-sits in the coming months.

The pier always brings out the emotional and philosophical parts of me. Faith, love, joy, pain, truth in many forms. Moments of beautiful solitude weave them all together.

I have said for years that a tree in summer is beautiful to behold, but only in winter do we see all its branches. Well, early spring does its best to show it all, with tiny buds promising verdant greenery amid the geometrical complexity of a season just ended.

Those of you who know me now know the tree in winter, with all its finery stripped away to better survive the cold. I hope that this current storm might be the last for a while, and that I might find the strength to form buds that contain the promise of a brighter future.

Good Recoup Day

The problems of yesterday definitely bled into today, with the exception of the somewhat more intense nausea I had felt. Lucky for me, Mei came down in the afternoon and hung out till pretty late, so I didn't notice. We started off with a test run of Pikmin 2's two-player battle mode. Much emotional scarring occurred as planned.

We spent the rest of the day watching Battlestar Galactica, specifically the miniseries that started off the new version of the show. After a Pizza Hut pickup and chow-down, we tried out some anime (the name escapes me), which looked interesting but was confusing due to us jumping in half way through. Mei headed out after we strategically missed the ending of said anime by talking through it. Oh well. Hopefully it'll be on again in a few days.

Thanks for coming, Mei! The difficulty of the drive is certainly not lost on me, and it means an awful lot that you'd make the trip anyway. I have already planned that you and Heather will be the first to benefit from my rent-a-pult™ once I get a prototype built.

Taco Revitalization

I was able to refuel my energy reserves a little bit with a taco dinner, one of our family favorites. Fortunately I am still seemingly eating the same amounts of food despite my upset stomach. I am still happy that today is almost over, because I'm positively beat.

I get two days off and resume radiation on Monday. I don't know how people keep going to work while doing this. I guess it's because they have so much more energy to start with, but I'm handling about all I can at the moment. Whoever happens to be reading, feel free to stop in and lounge around with me. I have some fun multiplayer game options available now for both PC and Gamecube, and have some DVDs coming in as well. We could hit up a nearby food joint too.

Zap Zap Zap Zap

I just got back from a supposed 4:45 radiation appointment. I felt I needed to avoid my mid-day snack till after the treatment, and then there was a really long delay before I even went back to the room. It took the crew there longer than the past two days because they couldn't initially find my marks. I feel terrible.

Zap Zap Zap

Session 3 is in the books. I had to wait today with a few other folks because they were running behind, but oddly it didn't seem to cause me any harm. Once I was taken into the room, I asked the staff to mix it up a little, so they put me in a bowl and put me in a giant microwave on high for 2 minutes. Next time I'm requesting one of those splash guards...

Ok, not really.

As was the case yesterday, the treatment itself took around 5 minutes to complete. Using yesterday and today as a measure, I seem to not suffer any noticeable short-term effects just after treatment. Instead, I have a perpetually upset stomach and increased tiredness regardless of the time.

I just added a TV and Movies category to my page in preparation for the slew of movie reviews that will likely be forthcoming. Tonight, a will be sampling Pride and Prejudice, which hopefully will not contain any flashy CGI work. Hehe.

Zap Zap

The Tate Center called today and I was able to get my radiation completed a few hours ahead of schedule. I feel good about that more for their sake than mine (they stay late too much), but it's also good to have it over with for the day. This treatment took much less time to complete as expected (about 5 or 10 minutes.)

I am discovering that the nausea element remains persistent regardless of the time of day or night. That is unpleasant, but if I am lucky I will adapt to it within a couple of weeks.

Zapped

I got my first radiation treatment of 25 today. It took longer than they apparently will most of the time, because x-rays had to be completed to confirm the positioning of the marks they placed on me a week and a half ago. Speaking of marks, I look slightly like a whiteboard marked with a play designed to win a basketball game. If you want to know your role, just ask and I'll tell you which 'X' you are.

I came out of the treatment tired, and after about 15 minutes the nausea hit. I've had worse from medications designed to help me, so I didn't feel this was too big a problem, at least not big enough to stop me from eating regularly, including a sundae from the Daily Scoop up the road a few miles. I was also able to get through my osteopathy treatment, which helps to relieve some of the problems I get day to day, particularly during times like this. Hard lab tables have a high price tag for folks like me.

I timed my Netflix signup just right, so I was able to pop in Serenity a few minutes after I walked in the door, which brings me to now. Coulda been better, but coulda been a lot worse I figure. Five weeks of this is a lot, but I'll do it, and hopefully watch some fun movies and hang out with some friends and family along the way.

I'm Going In

My radiation appointment is for 2:45 today. If I do well I'm going to follow through with my previously scheduled osteopathy appointment in Annapolis and will be home a bit late. I don't have to make that call until after the treatment though, which is a plus.

I Take It All Back

Yesterday I talked about how things were improving and how my mind was fairly clear... well today the weather shifted 10 degrees and I'm taking it like a rag doll on the freeway. I didn't sleep well (probably directly because of the weather shift) and am having a hard time focusing my eyes on things without side effects now. What a way to spend my last day of non-zapped recovery, eh?

Hopefully I will improve as the day progresses.

Treated but Hurtin'

Mom and I got Trager massage and nutritional IV treatments again today (we're doing it every week to help counteract everything going on.) The treatment was fine, but I'm having big problems with one of my toes. The nail bed is inflamed and it's kinda hard to walk today. On the plus side, the problem is years old, but nobody had ever diagnosed (it seems to be paronychia) it till today. Now I might be able to actually fix it if I can get the right medicine.

In terms of my surgery and non-stop appointment recovery, I'm doing a little bit better now. I am still feeling the need to recline for a good while early in the day, but I seem to be able to sit up fine later at night without paying for it. I did so last night and played a little bit of Morrowind after a long hiatus from the game. (I'm a lizard-man named Sssteve.)

My mind has also been pretty clear. It's going to take some time to experiment, but I may actually benefit long-term from reclining earlier and sitting up later. Maybe it will allow me to do something more constructive with my time in a more consistent way. It's just a theory, but I'm going to keep it in mind.

Mildly Worried

I've been feeling a similar lack of energy today as I described yesterday. It's not quite like my usual CFSish fatigue. Mom was particularly tired as much as a week before coming down with this nasty and persistent flu-like illness. This would be pretty horrible timing were this to turn south. I'm doing my part to prevent it though with zinc tablets and by upping the frequency of my nasal irrigation routine.

In other news, the LSU / Texas game was every bit as good as nearly all of the others have been this weekend. What a tournament!

Actual Work

I finally completed my community's online newsletter after a month of, well... not. I think I had a pretty good excuse though. Now my eyes are bleeding and the Firefly theme song is running through my head over and over and over again. I'm also really exhausted today, which is hopefully not related to mom's flu-like illness.

I think I need to be put down. Well, no, give me a few hours to change my mind at least. Hehe.

Testing Complete

I'm home from my last fertility testing appointment. The preliminary report (2 samples tested out of 3) suggests that everything is still normal, which I must say comes as something of a pleasant surprise. I don't know at this point if I'll be retested after radiation or what. That seems logical.

Bored but Restful

Today was another one of those searching for something to do while in a reclining chair that won't take too much energy days. I got my mom playing Diablo 2 a bit, but she has the flu right now and is mostly sleeping. I did successfully resist the urge to check friends' sites 3 or 4 times despite the near-certainty that no new content is posted. (Yes, I do that sometimes. Email too.) Other than that, I just watched TV and the like.

It's not quite what I'm wanting, I know that much. I used to manage to be fairly content with my activities given the nature of my health, but that isn't really true anymore, even when I'm in the middle of cancer treatment. I suppose I feel like 10 years is long enough to be in a holding pattern. I hope I can use this discontent somehow to rise out of it, but there are a lot of barriers in the way. I may have said all of this before. I can't remember.

In the grand scheme, today wasn't a bad day or anything. Just kinda pointless. Looking toward the next month and a half, I did get more rest before starting in on radiation. That won't hurt I imagine. I wish this TV served better as a monitor so I could at least get some bigger web updates completed for my community, or maybe play around with a design for a business site of my own. Not yet, not yet.

I think I'll watch another episode of Firefly before an early bedtime. My last fertility appointment is tomorrow. I'll be happy when that is out of the way.

Invalid Fun

My CFS friend Heather came over today while on spring break. Obviously Rancho Mosmillero is a primo spot to spend such a break, but I digress. We watched a couple episodes of the intense and visceral cop show, The Shield and otherwise talked about all sorts of issues, ranging from gay marriage to wealth distribution to religion. Even though Heather was wrong about everything, it was a good, thought provoking day. Hehe, just kidding. It wasn't really that good of a day. Ha, kidding again! I am a veritable laugh riot tonight.

I did pretty well today from my Reclining Command Center™, partly because we kept it pretty low-key, and partly because having someone over goes a long way toward helping me ignore how I feel at any given moment. That's bigger than you might imagine.

Anyway, it was great to see you Heather. I hope you can come by again before long. When my rent-a-pult™ is complete it'll get a whole lot simpler.

2 of 3 Knocked Out

I have just one more of these fertility testing appointments to go before I'll have everything out of the way for radiation. Not much else to say at the moment. I'm beat, but laying here for a while will hopefully help. Bring on the NCAA games! (Do they even play today?)

Day O' Massage

A Trager massage therapist/nurse who is now also a friend of ours came by again today and treated mom and I. You just can't beat in-house treatment like that when you have a chronic illness. I got a nutritional IV and the massage treatment, which should help me bounce back just a bit from all of these appointments I've had lately.

On another note, did any of you watch any NCAA basketball today? This tournament is full of great games, and surprising upsets too. When George Mason beats North Carolina you know you're in for a ride. I've said it before and I'll say it again. If I had to be laid up for a while, this was definitely the best time for it to happen. Olympics, tournament basketball, Star Trek overload, it's all here!

Slightly Better

I didn't really do much of anything today. I needed that honestly after a solid week of appointments. I engaged in a wrongly-hilarious conversation with Spud, an old church and school friend, discovered picture in picture mode on this TV while trying to fix the image quality (no luck on that part), watched some basketball and an episode of Firefly. I think I might watch another one now.

I think I faired a tiny amount better today. I still have to walk a fine line for the first half of the day in order to avoid day-long repurcussions, but I seem to be able to get away with a little more physicality now. I moved around around the Reclining Command Center™ more, and moved the wireless keyboard around quite a lot. I think that would have messed me up a week ago.

More Appointments

I went in for fertility testing and banking today. I have to go back two more times, probably Monday and Wednesday or something like that. It's easy to schedule, so I can change the times at any point, which is convenient. I am hoping to get this all out of the way as early as possible so I have a few days to rest up before starting in with radiation.

I am in a lot of pain today and unfortunately don't have a method to get rid of it for possibly 2 months. We'll see. On another note, this is my 222nd post. Kind of a fun number.

Setup Complete

I am home from my setup appointment. The whole thing took a bit over an hour, in part because they had to scan me twice. The first scan didn't go low enough to be complete, so they reset and started over. The CT table was rock hard, and by about 10 minutes in my limbs were all going numb or were numb, as I was not supposed to move at all. It is hard to relax into nerve pain, but it's all over now and the actual treatments will be much shorter and later in the day. At the end of the scan, I was marked up with magic marker in three spots around my midsection, then injected just beneath the skin in each spot with a little bit of dye.

I go in for radiation treatment #1 on Tuesday, March 28th at 2:45. From that point on I guess I will be there every day for a month and a week.

I Met the Second Radiation Oncologist

Today I had my appointment with Dr. Oh up at the Tate Center in Glen Burnie. After what appeared to be a sketchy beginning (the first nurse was not familiar with the names of any of my prior surgeries), everything straightened out nicely, and I plan to undergo my radiation treatments at this facility instead of at Hopkins. The difference between 15 minutes and an hour one-way in a car is pretty huge for me.

Dr. Oh also reinforced the radiation option over chemotherapy or observation, and declared a little hard area under the skin at the base of my abdomen to be nothing problematic. This doc has me slated for 25 sessions, so that means 5 weeks instead of 4. I still think tne shorter distance will help me more despite an extra week of treatment.

I go in tomorrow at 8:30 AM (ouch) to get my preliminary scans done so they will then know precisely where to radiate me. I expect to start actual radiation after another week and a half or so have passed, because I need to get fertility testing and banking handled prior to the start of the radiation process. Dr. Oh says that I should expect poor results on that test, which I must admit is a blow. I am experienced with having dreams put in serious jeopardy, but at the same time, I don't think it will ever get any easier to handle it.

Right. So, setup happens tomorrow followed by about a week and a half off, followed by 5 weeks of radiation therapy. I shall keep you posted as always.

Cousin Cindy's Site

After a recent email exchange, my cousin Cindy has decided to post all of her cancer-related information on the internet. For any wishing to see what she's going through, visit Cindy's Cancer Adventure.

I still haven't Pikked any Min yet. I shall try to complete a day in the game now before bed. I will need much luck if I am to successfully acquire a spaceship part and also make my bedtime.

More Osteopathy

I woke up today feeling rather like grim death, but my Osteopathy appointment turned things around pretty well. I was concerned about eating out, but it was no problem at all, and now I have some great leftovers too. I shall attempt to cap off my day with some successful Pikmation. Perhaps I shall report on that later.

I got another bit of a scare today at my appointment, actually. I brought up this little hard bump at the bottom of my stomach (turns out it's kind of a line) and the doc suggested I show the oncologist. He thinks it's something routine (he gave me a name I forget of something common) but of course can't be sure. I'm starting to feel like I need a full body scan in order to ever be comfortable with body again. Yeesh.

Pikmania

I managed to blow all of today playing this game (right now that's a good thing), and I now have 15 spaceship parts in 11 days. Not bad for a beginner if I do say so myself. I still have demon-hedgehog birds to contend with, but I am making steady progress otherwise and have plenty of lands to explore free of said demon-hedgehog birds.

I avoided some of the nastiest health backlash today by camping in my Reclining Command Center™ for all but a few minutes here and there. My eyes didn't like it and I developed a nasty headache, but I still felt a lot better than yesterday as a result of this decision. I will have to continue experimenting I guess.

My post tonight reminds me of a law I created over the past two weeks or so:

When faced with serious adversity that places you in a position of helplessness, you are allowed to toot your own horn a total number of times not to exceed five over a two-month period.

I think I might have used mine up. :)

Frustrated!

This surgery recovery is really getting old. I'm used to being tired, but now I can't sit up for 15 minutes without paying for it the rest of the day. If I sit in my reclining chair and keep my eyes open the entire time, I even pay for that. It's really hard to cope in meaningful ways when you have to make an intentional effort to do absolutely nothing all the time. Today I decided to just give up on trying to feel decent and am sitting here playing Civ with mom. That means I get to feel like I have been injected with harmful chemicals after staying up all night for several days running. So, is it better to do absolutely nothing and feel decent, or do something, anything, and feel miserable? I don't think I know anymore.

Having the choice makes it worse in a sense, too. I have felt this way before in situations where sleep meds backfired on me, but the lack of choice in those situations forced my hand in a way that made it somehow more tolerable. It's a choice that maybe you have to experience to understand. I couldn't say about that part.

What I wish I could do is somehow artificially create the adrenaline assistance I get when people are over or I have some kind of obligation. I doubt that's possible, and if it is, it would probably hurt me more in the long run, but I could sure use some tools to fix this situation. I'm all about doing things to help myself, but I'm kinda tapped here.

Weird

I feel absolutely miserable physically today. The weather shifted another 20 degrees overnight, as has been the theme of this winter. At the same time, I am in good spirits. Barring some sort of external factor, my mood is usually linked very closely with my physical state. Well, whatever. I'll take what I can get. Maybe I can take a walk around the yard today or something like that.

Not Again!

Kevin stopped over again today. That jerk! Wait, I mean, it was fun. We killed lots of monsters mindlessly, and my archer character gained a secondary attack from a pet butterfly. Seriously. I didn't feel great today but I got outside to enjoy the 60 degree weather for 10 minutes or so, and the Kevin stop-in meant lots of Reclining Command Center™ quality time without having to engage any of the issues of the day. Nothing wrong with that.

Appointment Scheduled

I have an appointment to see a doc in the new Tate Center (a branch of what was called North Arundel) next Wednesday at 3.