June 16, 2008
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!
July 30, 2007
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.
February 22, 2007
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.
November 27, 2006
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.
October 28, 2006
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.
October 10, 2006
This is the Answer
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.
October 05, 2006
I Expect My Pulitzer Any Day Now
... 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.
September 30, 2006
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.
- 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.
- 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.
- 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.
- 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.
- Do you view your CFS experience as more similar to or distinct from that of women who have the illness?
- 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.
- 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.
- 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.
- 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.
- 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.
- 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?
September 20, 2006
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.
September 13, 2006
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.
UpdateIt's later in the day now. I played tennis with my friend Amy as we try to do weekly, and man was it weird. Have you ever engaged in athletic activity and performed reasonably well (skill-wise and endurance-wise) while simultaneously having to concentrate to not nod off to sleep in the middle of it? That's Lyrica. Hopefully the sleep part of it will fade as it started doing when I was taking one pill for a while.
September 07, 2006
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.
September 02, 2006
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.
August 29, 2006
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.
August 28, 2006
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.
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.
August 18, 2006
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.
August 14, 2006
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.
August 08, 2006
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?
August 04, 2006
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.
August 02, 2006
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.
July 25, 2006
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.
July 23, 2006
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.
July 22, 2006
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.
July 09, 2006
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...
June 25, 2006
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.
June 17, 2006
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.
June 11, 2006
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.
May 23, 2006
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.
May 15, 2006
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:
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.
May 06, 2006
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.
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.
May 02, 2006
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.
May 01, 2006
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?
April 28, 2006
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.
April 27, 2006
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.
April 25, 2006
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!
April 24, 2006
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...
April 22, 2006
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.
April 21, 2006
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.
April 20, 2006
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.
April 19, 2006
April 18, 2006
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.
April 17, 2006
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.
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?
April 15, 2006
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. :)
April 14, 2006
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.
April 13, 2006
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.
April 12, 2006
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.
April 11, 2006
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.
April 10, 2006
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!
April 09, 2006
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.
April 08, 2006
'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.
April 07, 2006
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.
April 06, 2006
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.
April 05, 2006
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.
April 04, 2006
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?
April 03, 2006
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. :)
April 02, 2006
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.
April 01, 2006
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.
March 31, 2006
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.
March 30, 2006
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.
March 29, 2006
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.
March 28, 2006
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.
March 27, 2006
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.
March 26, 2006
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.
March 25, 2006
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!
March 24, 2006
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.
March 23, 2006
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.
March 22, 2006
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.
March 21, 2006
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.
March 20, 2006
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?)
March 19, 2006
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!
March 18, 2006
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.
March 17, 2006
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.
March 16, 2006
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.
March 15, 2006
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.
March 14, 2006
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.
March 13, 2006
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. :)
March 11, 2006
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.
March 10, 2006
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.
March 09, 2006
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.
March 08, 2006
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. That gives me a few days of break, which I won't argue against, and also a second opinion.
I also got some more behind the scenes help today from a web guru who I can't credit for what you might call legal reasons, for lack of a better term. If you're reading, thanks yet again for the help!
March 07, 2006
Day of the Vegetable
In probably one of my more intelligent moves of the month, I did absolutely nothing today but play video games from my Reclining Command Center™. I started out with a little gem called Pikmin, then moved on to Gauntlet: Dark Legacy when Kevin arrived on the scene, fresh from jury duty (he didn't get picked.) Sometimes it's good to have a brainless day in the midst of chaos, especially when you're tired from a big appointment the day before.
Thanks for stopping in again today, Kev. I shall have to master this Gauntlet business so you don't dominate me utterly the next time. Hehe.
March 06, 2006
This One is Good, Folks
As most if not all of you are aware, I sell note cards for charitable causes as I am able, though I lack a proper marketing engine to do it very much. Mom has sold them from time to time at both church and at her school, George T. Cromwell Elementary. A couple weeks ago, right in the heart of my cancer ordeal, I got something that made it seem all worthwhile.
Apparently one of the third grade classes is currently learning about small businesses. Below you can view the product of one kid's "business." You can enlarge these images by clicking on them as usual.
Apparently Ronnie or Ronnie's partner's mother purchased some cards from my mom late last year. Ronnie remembered the card and remembered the idea of my card sales being a small business, even if only in the loosest sense, and created his own card company in class. He brought mom the card above (the 3 images are front/inside/back) to give to me when he learned I was going in for surgery. Is that not the neatest story? I think so.
I Met the Radiology Oncologist
Today was my meeting with radiology oncologist Dr. Song. We reached Hopkins at 2:30 and left at about 5:30. Once I got back to the room we talked at length with and I was examined by a resident with a couple of years left in his training. While I appear to be clean of the seminoma as far as blood testing and CT scanning can determine, my case is atypical due to the beta HCG level in my first blood test. This guy led us to believe that I would in fact not be getting radiation and would instead undergo chemotherapy, but he was overridden by Dr. Song 45 minutes later. I will be getting radiation, 4 weeks worth, 5 days a week, starting probably in 2 and a half or 3 weeks.
We discussed the possibility of having it done closer to home, perhaps at the Tate Center up in the North Arundel Hospital complex, but the Hopkins folks weren't really able to help us much in that regard in terms of a recommendation or with the transfer of information. I may have to go through this all over again up there if I want to avoid the 45 minute or hour travel time to Hopkins every day for a month. We were given a folder full of information though and I can at least check and see if they have the same type of equipment, which seems to me the most crucial element in something like this.
Doctors at every step have also highly recommended that I go to a fertility doc for testing and also to have sperm banked in case the radiation treatments render me sterile. I was not given any kind of numbers regarding the chances of this occurring, but obviously this isn't something to be overlooked regardless of the odds. I plan to get this done as well, but until we know if we're shifting to a new facility or not, I won't know just where I'll be going. The annoying thing is that if I wind up at another instituation, the Hopkins people won't really be involved anymore. That seems sort of unecessary to me, but that's the way it is.
I also learned that I'm now considered at high risk for getting this again on the other side, with maybe a 1 in 20 chance of that happening. I got this info from the resident though, and he may have been a little alarmist about the numbers. I was told to perform a monthly self-exam so as to catch anything like these as early as possible. I'm pretty sure the surgical procedure would be drastically different were this to occur, so I'm just hoping I will never have to worry about that. I had to make a point of asking how to do the self-exam or I'd have no more ability to do that now than I ever did. This makes me wonder what else I'm supposed to be checking that never gets mentioned, despite my significantly higher rate of doctor's appointments than your average citizen. Do yourselves a favor and ask your doctors about what you should be checking. You may never know otherwise.
Dr. Song's nurse was especially helpful and friendly. The folks in the oncology center were slightly more disposed to take seriously my CFS and NMH problems as well, though they really had no idea how to help me with regards to that information. I asked the nurse to convey to the appropriate people my concerns over the exam room chairs, and I feel confident she will do so. She understood what I was saying, and hopefully she and I can help other patients down the road with this little bit of "proactivity", if that is in fact a word.
The side effects brought to my attention were the possibilities for nausea (diarrhea, etc. included), a probability of fatigue, and an increased risk for other cancers down the road ranging from a 30% to 100% increase compared to a non-radiated individual. I think this might sound worse than it is considering the risks of things that aren't commonly statistically labeled in this way, like driving recklessly or eating an imbalanced diet. On the plus side, I will be checked frequently for all sorts of things from here on out, so that might actually improve my odds over the guy standing next to me in some ways. The con of course is that all of this is very tiring for me.
One thing I should note is how much my parents are helping me do all of this. They're making all the phone calls, keeping all of the paperwork, filling out forms, taking notes, driving me all over, and representing me as needed on the phone and in person when necessary. Without them I would be hard pressed to have even had the surgery by now, let alone try to move my radiation treatment to another institution.
So, there you go. 4 weeks of treatment for 5 days a week barring an about-face if I have to get a second assessment done in a different location. If any of you have info that can help me out I am happy to talk with you. Actually, I'm happy to talk to you if you don't have any info as well, so feel free to give me a ring, add a comment, or send an email. My email address is available at the bottom of every page on this site.
March 05, 2006
Tired but Happy
I started today much as I have for the past week, tired but resolute, with the noticeable difference being that the burden of "the wait" had been lifted, of course. It is amazing just how much that impacted the last few weeks in a kind of "behind the scenes" sort of way. I did not feel panic, intensive worry or anything along those lines really before yesterday, but everything had a kind of heavier, maybe dark quality and an insidious sense of urgency to it on account of that wait.
Friends Pat and Mei stopped in around 4:30 or so and stuck around until just a few minutes ago. As was the case with Kevin and I a week or so ago, we all were soundly defeated on many levels by a video game, in this case the head-to-head mode of Ratchet and Clank, Up Your Arsenal. I see potential in this game along the lines of that found in Mario Kart Double Dash's battle mode, but wow is it hard! I was able to stave off injury by complaining frequently, but I think Pat is going to need surgery. Fortunately I know a guy.
We eventually headed out to eat at Lista's, where both Mei and I tried mole sauce for the first time. I have to say that I expected a bolder taste, but I really enjoyed the dish when I rolled the chicken into a tortilla with the other usual Mexican "fixins", like pico de gallo and guacamole. Each of the components really played off each other to create a great dish. The fried ice cream dessert didn't hurt things one bit either, and that place makes a killer cherry coke. I think I gained 20 lbs easy.
Upon returning to Rancho Mosmillero, we puttered around in a low-key sort of way, which is just what I'm needing about now. Mei showed me a bunch of interesting sites and set me up with a Google homepage that shows the latest content from many of my frequent web stops. I'm going to use this for a few days and then possibly comment on it further in my Links and Tips category along with a few other handy programs I've picked up over the past year.
All in all, a fantastic day. Thanks for stopping in guys! As soon as I complete this teleporter pad I've been designing, we can do this more often. I'm going to need some guinea pigs to test it out, but once it's done I'll be able to ship people across the State using my patented rent-a-pult™ technology. Any takers?
March 03, 2006
I just got home from my appointments at Hopkins. There was again some waiting involved, but it was not as bad as before. So, to the meat of it... My CT scan was normal, and my bloodwork was also normal, so though I cannot officially be declared "cancer free" until after radiation therapy, I'm close if not there now. Radiation will take place in order to fry any microscoping remnants that may or may not have spread into the lymph nodes in my back.
I see Dr. Song, a radiologist, on Monday and am going to investigate the possibility of having it done closer to home. There is a healthy difference between a 20 minute drive and an hour drive, so I am hoping it will not be a problem for that to occur. I may also find out at this appointment how often I need to be checked over the next five or so years. The urologist wants to see me back in a year, which is substantially later than I had imagined from my reading. It would certainly be nice if I didn't have to add bimonthly appointments to my doctor appointment lineup, so I am hoping that'll be enough. It's hard to complain about a once a year appointment.
So, things are looking good. Radiation isn't going to be a walk in the park with my existing health problems, but I have a definite light at the end of the tunnel to keep me moving along. Thank you all for your continuing support. I'd like you all to think about an idea I had over the past couple of weeks that I will describe below.
When all of this is over, I would really like to get a big group of family and friends to go to the aquarium, natural history museum, or both over a few weeks, and I would further like to not have to be the organizer of it all. I have not been to either place since I was a little kid and I think this would be a great way to move out of a rough situation. I would need a wheelchair to last through the day, but I would be able to handle that concept I believe. I think it would be a lot of fun to get whole families in on it, kids and all, and if people drove separately some could leave earlier than others if they needed to do so. This could happen as a big family and friends arrangement, or we could set up a family day in one place and a friends day in the other. I am confident everyone would get along great regardless of which way we chose to do it. So, send me your comments with your thoughts on this idea. It's too early to figure in any dates because I don't know how long radiation goes or how whipped I will be on account of it, but that can happen once a few weeks have passed.
March 02, 2006
I have exercised extreme caution today and wound up a tad better off to this point. I cut out some of my stretching and stuck close to my Reclining Command Center™ watching Star Trek episodes. It hasn't been particularly interesting, but I am avoiding some portion of my recent problems, so it's worth it. I'd like to include something more positive here... Let's see... I have continued receiving cards, a few emails, and phone calls from people checking in on me. A former music teacher of mine even got us a copy of Lance Armstrong's book and called up to make sure we didn't have it already. Plus, only one more day till I find out what is going on. That's not so bad eh?
March 01, 2006
I've racked up another woeful health day today. Last Thursday's assessment to the effect that I should rest again after my morning routine seems to have been in error, because nothing is working at all. I got really frustrated earlier this evening for this and other reasons, and I'm really hoping that this situation will shift favorably in the near future.
February 28, 2006
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.
February 26, 2006
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.
February 24, 2006
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...
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.
February 23, 2006
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.
February 22, 2006
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.
February 20, 2006
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...
February 19, 2006
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!
February 18, 2006
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.
February 17, 2006
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.
February 16, 2006
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.
February 15, 2006
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.
February 14, 2006
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!
February 13, 2006
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.
February 12, 2006
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.
February 10, 2006
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.
February 08, 2006
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.
February 04, 2006
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.
January 19, 2006
I Return, Haggard but Alive
My appointment today with Dr. Shor was about what I expected, with perhaps a little more emphasis on tests and a little less on in-depth conversation. I now have lab work to get done of course, and have to return for a morning appointment in a few weeks, which will just trash me utterly if history is any judge.
Today's appointment raised to a head an issue I have been wrestling with for a while now. I really don't believe that doctors consider the stresses on their patients when engaging in the business of medicine. Using today as an example, had Dr. Shor's office had the foresight and put forth a little effort, I could have had this lab work already completed locally and had it shipped to the specific destinations specified by the office. I could have had the EKG anywhere, and had physical results done at Hopkins even and sent to Reston, VA without my ever showing up in Reston. Not surprisingly, Dr. Shor had little to discuss today given that he only passingly knows anything about me, so why not schedule an appointment with all of the data readily available? I do not write this with the intent to call any particular attention to Dr. Shor or his office, but rather to illustrate the pervasive attitude towards CFS and similar conditions by the health community at large. With a modicum of effort and likely no monetary cost (let's face it, they don't take insurance anyway - today was $474 I believe), most if not any office could make the entire process a great deal easier on those of us suffering from fatiguing illnesses.
January 18, 2006
Appointment in VA
Tomorrow is my big appointment with Dr. Shor in Reston, Virginia. That means an hour and a half to two hours in a car both ways, and in the midst of serious back, neck and arm tightness, one of my scariest symptoms. I am hoping Dr. Shor's treatment can do good where others have not, but the trip is worrying me immensely right now.
December 24, 2005
Sleep Meds Strike Back
Under the advice of my doctor, I have been trying out taking my sleep medication twice per night, once just before bed and again after several hours of sleep. Well, it's really not going well at all. I feel like I haven't slept in days again and my mind is wrapped in a foggy haze, which was my concern at the outset. I just wish I didn't have to feel this way on Christmas Eve. If you read this and can give me a distraction or even just a lift, give me a buzz or leave a comment.
December 15, 2005
My appointment with Dr. Shor in Virginia today was cancelled due to inclement weather. I don't mind so much as long as it gets rescheduled before much time passes. The concert and appointment yesterday have me pretty stretched already, and I have used today to rest quite thoroughly. Go rest!
December 14, 2005
Christmas Concert Aftermath
So, now that I've reviewed the concert itself, let me tell you what happened on the way home... Mom and I took the light rail to the Meyerhoff to avoid parking and all, and on the way home we were burned pretty hard by that decision. Unexpectedly, we had a wait about 10 minutes for the outgoing train from the concert hall, but to the surprise of the few of us on board, the train broke down at Camden Yards. We were thus stuck in the dark for at least a half hour while the conductor tried the various means at his disposal to fix the problem and then call for another train to pick us up. For a while he was unable to open the doors, but eventually we transferred to a train heading for BWI. As a result, we had to disembark in Linthicum and wait standing another 20+ minutes in the cold for the train that would finally take us back to Cromwell Station. We were even offered an opportunity to buy a pocket knife from an unkept fellow during our stopover, at which point mom began praying fervently for a safe conclusion to our evening.
We did finally make it home in one piece, but I am seriously worried about the rest of the week. I have an appointment in Severna Park tomorrow followed by an extremely important appointment with a new doc in Reston Virginia, easily two hours from here. As you all probably know by now, I don't handle car rides well at all, and tonight's debacle could jeopardize won't help that one bit. On Saturday I hope to attend a family Christmas gathering here in Pasadena, but who knows where I will land after today. Say a prayer for me if you read this.
December 09, 2005
I seem to be quite frazzled lately. I really don't have enough days to devote to downtime at this time of year, but when I have had them of late I have been upset about not being able to do anything constructive, which then leads to thinking about the possible bleak future. I've also been fairly well panicked in my dealings with people in the sense that I am concerned that my old tendencies to be too direct or confrontational might be cropping back up. The thing is, everything is probably just fine, but I'm having a hard time buying into it.
There is a silver lining to all this though, which is that this is about as bad as I get, and I'm still able to get through the day alright. I wonder if this has any connection with the nerve tightness I discussed in my last health post? I think it is less likely that than just the general fatigue combined with the heightened activity level, but you never know.
December 01, 2005
I'm entering the time of year now where nerve and muscle tightness, particularly in the head to hand area, really becomes a problem. During this time of year I frequently experience pretty major problems at social events, particularly concerts that require prolonged sitting without movement in tight confines. I have over the past few years also had serious difficulties at Super Bowl parties held by a friend of mine.
Does anyone have tips for overcoming these issues so that I can go through the next few months with less worry over disastrous outcomes? I already put myself through a pretty extensive stretching routine, but that has never been sufficient come winter.
November 18, 2005
Today was a very difficult day, but I hope value may come of it. At 2:00 this afternoon we had a meeting in Finksburg (about an hour north) with the head of Catastrophic Health Planners, an organization focused on helping people like me into better situations, and for no money to boot.
The meeting started well with Mr. Lou Yeager describing the various problems each of us face and then explaining how a restructuring of our financial holdings could help me in the long run. After about an hour though, it just became the same speech over and over. My questions about diet concerns and the like were met with single-minded focus on Lou's plan outlined at the outset, and his answers were at times preachy, and at others downright insulting with no regard for the nuances of my situation. A few times he contradicted himself in terms of his attitude towards facing health problems. I cannot say I was ever afforded a chance to explain those nuances due to his approach. By the end of the meeting, we were instructed to form a plan over the weekend and contact them next week, despite the fact that we don't really have the information needed to form such a plan, regardless of my efforts to obtain it.
So now I'm home and probably shot for several days or more, which means I'll have to deal with frustration and anger with energy I simply don't have (nothing new here). I am going to try to drive this financial plan and hopefully get something done about the little house next door, but all with a sour taste in my mouth.
I cannot say I particularly like Mr. Yeager after today, but I will try to heed his advice in areas in which he clearly has experience. The problem is, can I trust his judgment based on the second half of our meeting? It could turn out that his devotion to a certain methodology is entirely misguided, but I don't have the resources to prove or disprove that notion.
I welcome advice on any or all of this. If you work in a financial field, maybe you can help me figure out whether or not to sign on for this plan. I can't give you a ton of detail now but I know some and will be learning more soon enough. If you're not into finances that's ok too. This whole situation is complicated and troubling, so I could use any advice you may have.
November 10, 2005
Though I do not technically have Fibromyalgia, my conditions are extremely closely related to it, and this article is a worthwhile read if you wish to get a better understanding of what I and others face.
October 28, 2005
I am as a man tied to a raft exposed to the elements. Those who know him gather around, saying, "how can we help you?" but not one moves to break his bonds.
October 17, 2005
I just got back from the wedding of two good friends of mine. I was a groomsman as well. In a nutshell, this weekend could really not have gone any worse for me unless I had been hit by a truck on the way home. This turned out to easily be within the top 10 worst things that have happened to me since I got sick, which essentially means ever. Please pray for me.
October 07, 2005
Site Bugs Fixed
The last few days have been immensely frustrating due to two small but persistent bugs in my Faiths and Empires campaign website. Neither bug is the result of bad code on my part, but rather errors in specific web browsers. I was able to fix both today to my satisfaction, but now I have to try to rest my right hand and arm for a while. Sadly, clicking and typing to the degree I've needed really screws me up. I'm still happy to have fixed those problems though of course. Hopefully now I can get back to adding creative and detailed content to make the site even better.
September 09, 2005
Presence of Mind
It occurs to me that I have not really written anything of substance about the nature of my condition or how I deal with it, so today I'm going to do a little of that. NMH and Chronic Fatigue Syndrome bring a whole host of symptoms to the table, but if I must boil it all down to one subject, it would be presence of mind.
Firstly, let me define the term a bit. When I say "presence of mind", I mean the focus it takes to hit a baseball with the bases loaded, give a speech in front of people, or write a report at work after being kept up all night by an unhappy baby. This type of mental focused gets stripped away if you have chronic fatigue—through the condition itself, and also by virtue of it being necessary to overuse this focus on a moment-by-moment basis.
You see, most people summon presence of mind to overcome obstacles they do not face as a matter of routine. A baseball player doesn't have to focus on coming through with the bases loaded more than once a week on average. People don't give speeches every day either, unless it is the same speech repeated for a different audience, and babies are not constantly unhappy, and even if they are, they eventually grow up, and most parents receive some help along the way in the form of family, friends, schooling, or day care.
For someone with a chronic fatiguing illness, however, it takes presence of mind just to get up in the morning, to sit straight in a chair, to have a conversation with someone, or to do accomplish virtually any task no matter how insignificant in appearance, even something as benign as focusing on the plot of a movie. The typical activities that require serious mental focus essentially become out of reach in most cases, as the focus required is eroded already by nature of the health condition itself, and what focus remains must be used constantly just to make it through a day.
As I write this blog post in what would constitute a no-pressure situation for most, I must constantly fight to keep my mind engaged at a basic level. On several occasions I have forced myself away from staring vacantly out the window, for instance, which then requires me to re-read sections of my post here to remember what I am trying to accomplish. Later today I will require the mental focus I am using now to make a phone call, then to endure the many problems I face when eating dinner, such as global muscle tiredness in many areas, including my jaw, back, legs, and hands, all of which are required to eat while sitting.
So, in order to achieve something greater than surviving with dignity into tomorrow, I am forced to hurt myself in some way, whether mentally, physically, psychologically, or all three. Writing this will preclude my reading anything coherently for at least several hours, more likely the rest of the day and possibly into tomorrow. The well of already eroded mental fortitude is essentially used up.
In a pinch, I can summon the ability to focus on activities in sequence, but at great personal cost. This is how I have been able to attend college for lengths of time, be in wedding ceremonies, complete web projects, perform in a recital, and the like. The consequences of such prolonged overuse of "presence of mind" results in months of increased symptoms on all fronts. For instance, after I have attended a semester of college, I can expect constant vision problems, disorientation, inability to listen to people talk, and minor wounds not to heal. There are a great many more examples like this, but hopefully this illustrates my point adequately.
I suppose that the level of mental focus I or anyone with a similar condition must summon is comparable to the classic feat of strength of a woman lifting a car to release her trapped child. We as humans are simply not built to endure that type of focus and energy. Otherwise, we would lift cars as a matter of course.
I have used up my presence of mind for the day, but I hope I have helped illuminate you to one aspect of NMH and Chronic Fatigue about which you may not have been aware. If you read this, give me some feedback. I will write more along these lines if this post proves helpful.
September 07, 2005
Some of you may be wondering why I haven't posted anything for the past month. Well, my health has been quite poor since my parents' return from their big summer trip, and more recently it has all been compounded by a greatly increased lack of sleep. I already have sleep issues 100% of the time, but the past two and a half weeks have been rather nightmarish. I'm still not right, but I am better off than I was a week ago. It is my hope that I will be back to my old, not so healthy self within a few days.
July 19, 2005
The Trip is Over
The folks got back at about 7pm tonight, and I'm kind of relieved. I usually enjoy having the house to myself when they take trips like this, but the last 3+ weeks have really been more sobering than enjoyable. Most days when friends weren't around to help out I really didn't have anything left after taking care of the necessities, like paying bills, getting mail and cooking. Once those were out of the way I typically just had to sit in a chair and watch tv. I really had effectively no independent thought for these weeks either. It's really scary stuff.
Regardless, I'd like to thank Aunt Mary, Uncle Clyde, both of the Russels, and Jen for helping me out or checking in on me on a regular basis. It's comforting to know that, were something major to go wrong, I would not be in a catastrophic situation. This condition really throws everything into a cloud of uncertainty and it's a great help to know backup is around the corner. My friends Amy, Kevin, Amanda, and Joe also chipped in to the "excuse for dinner cause", or the "get me to an appointment" cause, as did Ernie Johnson and Rich Connelly from Mt. Carmel. Thank you, guys.
July 07, 2005
First Crash of the Year
Perhaps not entirely surprisingly I suffered my first big system shock of the year while playing tennis yesterday. While I suppose I have been somewhat lucky not to have been through several of these by now, this still happened at an unfortunate time. I'm wiped out today, but thankfully I am prepared with what I need to eat tonight and have a physical therapy type appointment tomorrow, which could go a long way to getting me back on track. Sure hope so.
June 29, 2005
Osteopathy Saves the Day
My appointment with Dr. Kucine yesterday should give me a better shot at the next week or so. I didn't expect I would be able to get to these appointments (I'll have another in 2 weeks) but some friendly and helpful church folks offered to get me there and back so I would not have to drive such a large distance. Ernie Johnson got me to and from my appointment and we met up with his wife and grand-daughter to eat at Hunan Annapolis afterwards. It was really a lot of fun.
June 26, 2005
Already Feeling the Hit
My health situation is so discouraging. When my parents leave for vacation it becomes so clear that, not only can I not work and live a normal life; I am not even remotely close to being able to do it. I spent day one of my folks' trip basically just sitting in a chair. Why? It took about 7 minutes longer to pick out a steak at Giant than I could afford. I can still feel the effects today in fact, but I should have a friend coming by to help me out at least. It's all the normal little abberations that happen over the course of a day or week that I simply cannot withstand.
November 19, 2004
My health prevents me from doing a lot of things. Working, dating, exercising, driving - the list goes on. It's turning out that one of the biggest losses is my ability to make phone calls and hold phone conversations. I was never a big phone person per se, but now I have a hard time even picking it up to get a call started. It's kind of hard to explain really, since most people would think of making a call as second nature and easy to do. I suppose the best way to describe it is to imagine you have to learn how to play basketball in the middle of a marathon. It's a one or the other scenario for me in this way. Either I fight through the many physical and mental obstacles my health puts before me, or I fight the difficulty with phone conversations. Thankfully I can handle email and instant messenger conversations with relative ease, so I'm not totally cut off from the world.
Over the years I have done my utmost to maintain a close network of friends at the cost of my health on many occasions, but I increasingly hear from them less and less. I'm at the age where my circle of friends is getting married and finding stable work, so I understand that I may not see them as often as I would like. I feel that my lack of phone capabilities gets in the way as well, but my friends all know I have a hard time with phone calls.
Over the past year or so, however, I find that my emails go unanswered more and more frequently despite this, and frankly, it hurts. My friends all know about my health and that I do email far more easily than I handle the phone, so I feel like they should have the courtesy to answer messages I send in that medium even if it isn't their primary means of communication. 90% of the people I know check their email at work or otherwise have daily access, so unless I'm missing something, that's not a valid excuse. Am I wrong to be bothered by this?
November 08, 2004
Well, the appointment I was depending on to be even remotely functional isn't until next week. That means I can't visit local card shops and Christian bookstores as planned to see if they would sell my cards and bookmarks, not to mention having any shot at thinking clearly, being able to see straight, or not be in a great deal of discomfort. I was really counting on this.
November 06, 2004
Wow am I screwed up today. I'm lightheaded in waves, my heart rate is constantly in flux, and I'm having a hard time with vision and balance. I think this all started last night when I had to wait for an hour up at the road house on those benches with the pointy backs. Luckily I have physical therapy scheduled for Monday which will probably alleviate this problem, but I still have somewhere to be tomorrow. I'm a little worried.
October 03, 2004
Argh! Sick Again
I can't win. It seems like every time I do something fun, I get sick afterwards. This time it was hanging around with Kevin on my birthday. We didn't even go anywhere, but the energy investment weakened me too much. Well, at least I don't have any pressing commitments to worry about this week.