Strength Today

Relay '08 was once again a good time. It was a '70s theme this year which is always right up my alley. My personal designer (aka My Wife) went off and spent months constructing my Miss Relay outfit. I gave her the vision and she made it a reality. I thought I looked stunning and and had a strong Jimmy Page vibe circa Song Remains The Same. Although it was very Page, it was also very feminine rounded out properly with large, strategically placed balloons and sash. For the detail oriented, you may notice a dash of skin glitter for that extra sparkle. It all really popped on stage.

The evidence...


But as a twist this year, I decided to throw in a little day wear which was also a big hit. Everybody loved the hair which I thought captured the magic of a slightly more aggressive Napolean Dynamite look, which happens to be one of my favorite movies.

Once again, the evidence...


I've found that one of my greatest joys is making a fool of myself.

However, even with all the fanfare and paparazzi, the Miss Relay contest was once again a blowout. I didn't even podium, yet I made more money this year that the previous. We all made substantially more money which stuffed the buckets way north of $1000. I never heard what the final tally was.

Miss Relay '07 I was a rookie and placed 2nd. '08 I slipped and placed 4th while the same old hags showed up with pretty much the same outfits. Next year some bodies are going to drop and I will stand alone, on stage, with my tiara and all the hardware that comes with being crowned Miss Relay. Bob Franks is going down!!!!!!!

Posted by James at 5/21/2008 05:15:00 PM | Permalink | Comments

It's been a while and I've been very busy living a very normal life I'm happy to say. Everything has been going in the right direction with my blood counts and the leuk cells keep trending downward just as planned. I haven't even been stabbed in nearly 2 months as the doctor told me quarterly is fine. And I'm fine with that.

The family and I are getting prepped for our 2nd Relay For Life event. It's a 70s theme this year which will be super fun. For day wear I will be sporting an afro, naughty little cut off jean shorts and some long tube socks for era correctness. Night time will be all about my alter ego, Amethyst, as she turns the stage into rubble... all for the cause of course.

Speaking of causes, we all know that Relay For Life is an event to raise funds for finding a cure for Cancer. I'd like to direct anyone that would like to give to the cause to the little purple button above. It sounds cliche, but any little bit helps.

Just think if everyone in the US gave $1... that would be over $304,000,000 towards Cancer research. If that doesn't get you reaching for a little something out of your wallet, knowing that I will be dressing up as a woman AGAIN this year at Relay to earn extra cash should get you grabbing. Certainly you can sacrifice a buck or 2 or 3 while I sacrifice my dignity. Here's a little tastebud teaser...

Posted by James at 4/28/2008 08:45:00 PM | Permalink | Comments

Friday was bone marrow biopsy day. This is the BMB where we find zero leukemic cells, and I'm ready for great news. The BMB isn't the most enjoyable procedure, but it seems to get easier with repetition. This was my 4th one and it was no problem at all.

Things have been slowly improving on the blood front. I'm off the Neupogen, which I needed once a week to keep my WBC's in the safe zone. The counts are slowly coming up on their own. I actually had 2 totally normal CBCs in the past 2 months. This is an awesome trend because low counts were the only major obstacle I've had in the treatment so far.

Posted by James at 12/02/2007 11:25:00 AM | Permalink | Comments

Another approach to treatment and a really cool story. Hanging out in the garage is a productive thing! At least that's what I tell my wife.

Article

Posted by James at 12/02/2007 11:09:00 AM | Permalink | Comments

I've always been a big water drinker. It's pretty much all I drink aside from a cup or two of coffee in the morning... which is pretty much brown water.

There is no denying the benefits of water and the important role it plays in good health. Aside from zero calories, its good for the skin, digestive system, and energy levels, and helps your body purge toxins. Being on a heavy duty drug like Gleevec makes water intake even more important as it keeps the liver and kidneys in top shape.

One of the best things I've ever done for me and my family was to get fresh spring water delivered to the house. Thanks to Nestle Waters for pumping out the spring water and Zephyrhills for lugging 25 gallons (5 jugs) of water to my door each month! It's really not that much money either at a little over a dollar a day.

Before home delivery, getting my wife to drink water was a chore, now she drinks like a fish! And my little girl LOVES water. Not sure if its because she see's us drink it all the time or what, but she constantly wants sips. It's pretty cute.

That's my thought for the day.

Oh, and by the way, I'm feeling great!

Posted by James at 9/07/2007 07:09:00 PM | Permalink | Comments

A lot of people get nauseous from Gleevec. Early on, I used to get woozy maybe twice a week. I understood from the beginning that Gleevec needs to be taken with food so I opted to take my dose at night along with my usually huge dinner. But even with all that food, I still managed to feel nauseous here and there.

I initially attributed the nausea to the type of dinner I ate. I usually never felt sick after a greasy, carb dense meal like steak and potatoes. I’ve actually vomited once taking the pill with a salad which led me to believe I HAD to take the pill with a hardy meal and not something light. I’m now convinced that while taking the medication with food is important, more like essential, the timing of the pill is equally important.

I used to take the pill and then eat dinner, which resulted in nausea here and there. The right way is to eat exactly half your meal, take the pill, and then eat the rest. Since doing this religiously the last couple months, I haven’t felt nauseous once!!!

Posted by James at 9/03/2007 12:08:00 PM | Permalink | Comments

For the students of classic rock, that's an old Procol Harum song. For us CML'ers its our skin color from Gleevec. For me, this has been the most noticeable side effect from the medication. Well, other than my eye brows getting a little thin. I started noticing my skin getting pale about 6 months after starting Gleevec. Apparently it affects the pigment production in the skin.

I’ve never been one to hold a tan all that long. I tan relatively easy, but it doesn’t last long. My natural skin color is very European in line with my roots I suppose. I also have a FAIR SHARE of moles and “beauty” marks as my wife can attest. She so lovingly calls me “Mole Man”.

Unless you live in a hole void of the media, its no secret that the sun is BAD. For CML’ers, the sun is real bad because our skin becomes super sensitive and goes straight from white to burn with no tan in between. So I’m surprised it took me so long to discover the world of sunless tanning.

For anyone with fair skin, sunless tanning creams are a god send if you want some color. I’ve found that having some color not only makes me look better, but I feel better. Let’s face it, pale white skin is not the most attractive mode to be in, well, unless you’re Goth.

Facing cancer is as much mental as it is physical, maybe more mental. Appearing healthy will make you feel healthy which sets a positive tone in your mind. The Law of Attraction and the power of positive thinking states that what you hold in your mind you hold in your hand. Start to feel healthy and start being healthy.
I’ve tried a bunch of products with varying results. For the money, I thought these were the best…

Neutrogena makes good stuff. I like this stuff alot, but I should have got the "Medium" skin tone because the light was hardly noticeable. It has minimal scent which is a good thing and not greasy at all.

Neutrogena Summer Glow Daily Moisturizer

This stuff is pretty good too. Lot's of bang for the buck, but a tad bit greasy. Again, medium was the hot setup for me.

Banana Boat EveryDay Glow Daily Moisturizer

If you have an air compressor, get a spray gun and a bottle of Mystic Tan for the best results. I picked up my bottle here. A quart is $40, but you only use about 4OZ per session. It ends up being a bargain.

Posted by James at 8/25/2007 12:28:00 PM | Permalink | Comments

At this time exactly 1 year ago my life changed completely. It was the first time I found out that my swollen ankles weren't the product of a string of late nights with the boys, they were the product of being sick. Real sick.

At this moment last year, it wasn't confirmed that I had Leukemia or CML. There wasn't much else it could be though as my white blood cell count was through the roof. These were the doctor's words at the local walk-in clinic. He didn't pull any punches.

I'll never forget that slow motion ride home, a typical Monday capped off by such chaos. I never felt so alone or isolated. I was numb. It's hard to describe the feeling you get when faced with such heavy news. I imagine drowning would feel similar. Like an uncertain breathlessness and a feeling that you've lost control. Was I really going to die? How would I break the news to my fiancee and little girl?

Fast forward a year to the present. I know more about Leukemia than most doctors. I've definately overcome my fear of needles. I'm a little bit pale, but I'm alive and feeling pretty darn good! I've gained almost 30 pounds and it's about 90% muscle. I am stronger than I've ever been and stronger each week. I've been promoted twice at the office and just graduated from a 1 year IT management certification program. I still ride motorcycles and I just put a dream car in my garage (complete with roll bar). I'm definitely not dying.

This last year has not been a cake walk and to be honest, it has really dragged by. It's been a learning experience for sure and I've had my ups and downs. Gleevec has been doing its job and on schedule, but I'm still struggling with lower than normal WBC and platelet counts. I'm working on that though with a weekly shot of Neupagen and hoping for the best. I get tired from time to time, my eyebrows have seen better days, and I'm a lip balm addict. I can live with these things though and am thankful that this is the extent of my suffering.

I do a lot of thanking. I think most people with cancer do a lot of thanking. It's a gift in a way. Cancer is a wake up call for all involved, a reminder that life should be cherished. Thanks to medicine and a little luck, cancer survivors like me see grass a little greener and skies a little bluer. Each day is special in it's own way and everyday you notice something new and precious. It's good to be alive.

Posted by James at 7/17/2007 06:36:00 PM | Permalink | Comments

No matter what happens in this man's life, my need for toys will always remain. It's hard to explain, but I've always had a lust for old VWs. It's likely because I was raised in them sporadically through my early childhood. Possibly even conceived in one. One particular VW has always caught my eye, the MK1 Rabbit. I decided it was time to pull the trigger on a sweet one last weekend.



Now it's hard to explain why VW's effect some people the way they do. As for my brother and I, we need help. I guess if you are going to have love affairs with cars, it might as well be VWs, especially with the price of gas heading toward infinity.

They say laughter is the best medicine, well this little baby has me grinning from ear to ear!

Posted by James at 5/28/2007 05:59:00 PM | Permalink | Comments

Well, might as well get this out in the open...



This is the product of a last minute fund raiser called "Mr. Relay" where the men become girls. Having been dropped on my head twice as a baby, I gave it my all and created "Amethyst".

I thought I was going to blow all the other bitches off the stage, but some major talent emerged. The winner was chosen based on how much money they managed to collect from all the drag queen fans in the audience. I took 2nd place with $131 cold hard ones gathered. The winner collected $265, but I'm pretty sure he stuffed his own bucket with $100! The bottom line is, by reducing all of our manly pride down to atomic level, we raised about $1000 bucks with this event alone. We also had a lot of fun.



My first Relay was pretty cool. It was very emotional but I was impressed by how well I was able to hold it together. I even had a Survivor speach which is nearly impossible not to get choked up. I've finally turned the corner on accepting this new life of mine and have started making a ton of new friends in the process.

If you ever want to be around a great bunch of people, attend a Relay. Aside from the lack of alcohol, it's a party. This thing goes all night. Nothing like karaoke over stadium loud speakers at 3AM. The goal is to keep someone on the track walking at all times and they do a great job making sleep next to impossible, yet fill the evening with fun. Can't wait till next year.

Posted by James at 5/05/2007 08:15:00 PM | Permalink | Comments

His name was Fleming, and he was a poor Scottish farmer. One day, while trying to make a living for his family, he heard a cry for help coming from a nearby bog. He dropped his tools and ran to the bog.

There, mired to his waist in black muck, was a terrified boy, screaming and struggling to free himself. Farmer Fleming saved the lad from what could have been a slow and terrifying death. The next day, a fancy carriage pulled up to the Scotsman's sparse surroundings An elegantly dressed nobleman stepped out and introduced himself as the father of the boy Farmer Fleming had saved.

"I want to repay you," said the nobleman. "You saved my son's life." "No, I can't accept payment for what I did," the Scottish farmer replied waving off the offer. At that moment, the farmer's own son came to the door of the family hovel. "Is that your son?" the nobleman asked.
"Yes," the farmer replied proudly. "I'll make you a deal. Let me provide him with the level of education my own son will enjoy. If the lad is anything like his father, he'll no doubt grow to be a man we both will be proud of." And that he did.

Farmer Fleming's son attended the very best schools and in time, graduated from St. Mary's Hospital Medical School in London, and went on to become known throughout the world as the noted Sir Alexander Fleming, the discoverer of Penicillin.

Years afterward, the same nobleman's son who was saved from the bog was stricken with pneumonia. What saved his life this time? Penicillin. The name of the nobleman? Lord Randolph Churchill. His son's name? Sir Winston Churchill.

Someone once said: What goes around comes around.

Work like you don't need the money
Love like you've never been hurt.
Dance like nobody's watching
Sing like nobody's listening.
Live like it's Heaven on Earth

Posted by James at 4/14/2007 09:13:00 PM | Permalink | Comments

This page is like Cliffs Notes for explaining the Laws of the Universe covered and not covered in The Secret.

Thanks to whoever put that together!

Posted by James at 4/10/2007 11:56:00 AM | Permalink | Comments

I swear, 99% of dealing with illness is attitude. There is so much that the body can do that the medical community just can't explain. Your mind, thoughts, and emotions are such a powerful tool whether healthy or sick and it's so easy to forget that.

My wife and I have discovered a little known movie called The Secret, which reminded us of how important your emotions, beliefs, and wants are in the attainment of whatever it is that you want. Whether it be love, a new car (a BMW M5 in my case) or vibrant health, the Universe can deliver it. You just have to ask, feel, and expect. The Law of Attraction goes to work for you and opens the doors.

Obviously in my case, perfect health is on the top of my list. The absolute most critical factor in attaining that is a healthy mind; a positive mind free of negativity and negative feelings. Staying positive is not easy, but luckily, seeing positive amidst the negative isn't that hard either. After immersing ourselves in the concepts laid out in The Secret, I've nearly eliminated negativity in my life and have been feeling 1000% better than I ever have. Seriously!

I've stopped worrying about my illness entirely. I used to scour the CML forums for information about every little bump in the road I was experiencing... not no more. My WBC counts and platelets have been real low, but I'm not worried. Filling your mind with thoughts of illness, brings about more illness. The Law of Attraction says so. It's the same phenomenon that invented "bad days" and people whom if "there was no such thing as bad luck, would have no luck at all". I've uttered that phrase many times in my life (even without a guitar in my hand), but not anymore.

The Laws of the Universe, which The Secret is based on, does not reveal anything we didn't already know in way or another, they just remind us of the proper way to live. That includes living an abundant, stress free life which can only be obtained by submersing yourself in positivity and well being, being thankful for what you have, and always wanting more. Couple that with a conscious effort to avoid negative thoughts at all costs and you can write your own ticket.

So with all this said, I'm going to Monster Garage this blog into a positive place that's all about gettin' the drama squashed, are'ing what you eat, staying positive, and learning (while I learn) about the Laws of the Universe and the healing powers of the mind.

Oh, and let us not forget the "wow, it's been a long time since I last wrote".

Posted by James at 4/09/2007 08:37:00 PM | Permalink | Comments

No news really. I've been tolerating the 200mg bump on the Gleevec fine. I've actually been less tired than before, but I've also stopped taking the Allopurinol (for gout prevention) which like any drug has it's own host of side effects. I'm definitely a supporter of taking the least amount of medication. Before CML came around, I wouldn't even take Tylenol. The only medication I'm on right now is Gleevec.

My Relay For Life team held it's annual Mardis Gras party this past weekend. It went really well! I can definitely see this event getting bigger and bigger each year. We had an awesome band, a seafood boil, and a smathering of alcoholic beverages available for a nominal fee. Of course I was the bartender. I'm not sure yet on the final amount raised, but I think we really raked it in. Thanks to everyone (and you know who you are) that kept my beverage sales flowing literally and figuratively.

A pine cone and a cell phone is all a little lady needs these days...

Posted by James at 3/03/2007 11:03:00 AM | Permalink | Comments

Yeah, yeah, yeah! That's an old Elton John song if you don't know. I apologize once again for not posting in a while. I received another "ultimate stabbing" from the Oncologist a couple weeks ago to check on progress at a low level. It's called a bone marrow biopsy and I guess they will be a part of my life every 6 months or so for however long.

When I think about the procedure in the grand scheme of things, it's not that bad at all. Just a hollow corkscrew into your ass bone (hip really) and then a smaller tube that slides in to get bone, marrow, and blood from the source. Kind of like a straw pulling out ice from a slushy. I suppose it brings new meaning the phrase "tap that ass". The reality is that the procedure totally sucks. It's a weird achey sensation that lasts about 5 minutes that are just as good as eternity. I suppose I'll get used to it eventually.

Bottom line... the Doc upped my Gleevec dosage to 600mg from 400mg. At dx, 95% of the white cells in my marrow were leukemic. It's now at 65%. The Doc feels I should be lower than this considering I've been on the med for 6 months. Apparently he's on the warpath. He actually gave me the option of staying with the 400mg providing I get another BMB in 3 months. The jury is out on my view of BMBs, so bring on the 600mg.

So far so good. I'm starting to develop a bit of a rash on my ass (what are the odds?) and my energy has been subpar, but not too bad. I assume there will be some getting used to the extra dosage as my body adapts. Nausea has been pretty nonexistent. And so once again it's back to visiting my favorite Phlebotomist every week to keep tabs on my WBC count, a source of drama in the past. It's still crazy to think about how much of a surprise all this has been.

That's about it. I'm still hitting the gym pretty hard. Despite what you would think, I've put on about 20 pounds in 6 months and am stronger than ever. I'm using easily, 30lbs more weight on every excercise with the most strength gains in my legs and back. For anyone with CML, I can't emphasize excercise enough. By the end of the work day I feel tired and crappy, 10 minutes into a workout I feel awesome! I end up feeling great the rest of the day. I really hope to continue my good fortune.

Posted by James at 2/21/2007 10:25:00 PM | Permalink | Comments

Since the slump in my counts a couple weeks ago, I managed to find a new Oncologist. I met with him last week for a meet and greet, to talk about the super fun bone marrow biopsy cued up for Friday, and how he'd like me to talk to a bone marrow transplant specialist. Any talk of a BMT sends shivers down my spine and the mere mention of it sent my mind racing, but he assured me that it's good practice to get those wheels in motion in order to have a good backup to the backup.

Overall I thought the Onc was pretty knowledgeable and definitely rattled out the terminology that I've recently became so familiar with. He admitted that he wouldn't have taken me off the Gleevec because he thought my counts weren't too terribly low. As it stands, I'm not too sure where my counts are at because I haven't heard from him. I assume they are in the acceptable range, but I'm going to get them faxed to me tomorrow. I just like to know where I'm at at all times. Strangely, I look forward to getting stabbed on Thursdays for bloodwork.

Healthwise, I guess I've been feeling decent. Some days I'm real tired in the afternoons. Most days I feel pretty congested, almost like a real low grade cold. The only other thing I've noticed is constant neck pain. I don't know if it's my pillow, my job, or some weird side effect, but it's getting annoying. I daydream about seeing the chiropractor or some massage therapy. Could it be that the lifetime of jarring that I've put my body through is starting to catch up with me? That's a scary thought.

Posted by James at 2/04/2007 11:14:00 AM | Permalink | Comments

I've been into excercise and nutrition all my life, but since CML, I've taken it to the next dimension. I've found myself becoming infatuated with eating the right things and taking the right vitamins. After all, you are what you eat. Here are some of the latest things I've been reading up on and experimenting with...

Acai (Pronounced a-sigh-ee)
This is a berry that comes from the Amazon. It's been used for a thousand years and is known for being packed with anti-oxidants which are known to kick some cancer ass. Or at least help prevent it. Here's a study by the University of Florida that found Acai has positive effects in battling leukemic cells... http://news.ufl.edu/2006/01/12/berries/

"Red Lightning" by Nature's Plus
Came across this stuff at the health food store. Again, packed with anti-oxidants and an ORAC rating of 4000 "supposedly". ORAC rates antioxidant capacity in food.

Shark Liver Oil
You'd think I'd be consulting the Ouija board next, but this stuff has shown promise as an immune booster and a trigger for boosting platelets, which I'm also low on.

We'll see what happens. I really like the Acai so far. It's a nice healthy booster in the morning when mixed with juice.

Buy Vitamins and Supplements - Up to 75% OFF! Click Here.

Posted by James at 1/21/2007 10:46:00 PM | Permalink | Comments

My time on Gleevec has been great. I've had minimal side effects, the counts have been falling, Spleenzilla is long gone, and I've gone about living a normal life. Until recently I was going a solid month between blood work and 2 months for actual face to face doctor visits. Until recently that is.

With all the hoopla of my WBC counts falling from a once 195 down into the normal range I figured I was home free and that Gleevec was going to work out great. What I didn't anticipate was my WBC count sloooooooowly continuing to drop. Now white blood cells and related cells are kind of weird. You can't really feel where they're at like red blood cells or hemoglobin which when low, really takes the wind of your sails. So when the Doc told me my counts are getting too low, I was shocked. I felt and feel great.

Apparently my neutrophils have fallen slightly below the safe zone. From my understanding, neutrophils and your WBC count go up and down all the time, but this didn't stop the Onc from taking me off Gleevec entirely. Kind of scary when you find out your sure thing isn't so sure after all.

The time off was short lived at less than a week, however, I think my Onc is going to give me shots to boost my counts rather than take me off Gleevec which in the medical field is mostly frowned upon. I had to remind her about this little factoid which once again proves, study this shit on your own and always question your doctor. So on top of the dwindling counts, I went off Gleevec for a week potentially unneedingly. Go Buckeyes!!!

So now it's back to watching and waiting. As I write this, I feel great. I've been to the gym 2 days in a row and everything "seems" fine. Let's just hope my WBC's worked out with me.

Posted by James at 1/21/2007 10:24:00 PM | Permalink | Comments

My health is doing great! My WBC counts are a tad lower than normal, but hanging steady. Everything else is either good or going in the right direction. I'll know more next week when the results of my latest bloodwork come back. This last test was a more comprehensive test that will tell me if things are improving at a molecular level. I have my fingers crossed.

The big day is almost upon us. Soon the Buckeyes will dine on Gator tail and I can finally mute the comments from the Gator gallery. There are so many stores and public places that I will have to return to to rub the win in... or never shop at again. Hopefully I won't have to quit my job because I've done a fair share of talking there too. Ugh, I sure hope the Buckeyes win.

These 2 have a lot to do with how good I feel all the time!

Posted by James at 1/06/2007 09:26:00 PM | Permalink | Comments

I want to wish my friend Mary the best of luck in tomorrow's race. It still blows my mind that she's going to run 26 miles! In the months leading up to this race, she managed to raise $2,235 (her goal was $2,200) for the Leukemia & Lymphoma Society. That's just awesome!

Thank you Mary and thank you to all that contributed.

Click here to track Mary's progress.

Posted by James at 1/06/2007 09:20:00 PM | Permalink | Comments

Here is a great story on the medication that keeps me kickin'. Man, I sure am blessed.

Clicky

Posted by James at 11/28/2006 09:22:00 PM | Permalink | Comments

It has been a looooooong time since my last post. Hope nobody was worried. My health is doing great. Bloodwork has been coming back better and better and I'm actually getting tested a lot less. I preferred getting tested every week because then I had a better idea where I was at. Now when I have tired days, it's a mystery whether it's the medication or my blood going south. Luckily my blood has been good aside from a slightly lower than normal WBC count.

The gout is finally friggin' gone!!!! It was a solid 2 months of pain before any relief set in. The swelling has finally disappeared and I'm back to my normal antics including riding. For those with gout, Celebrex is the hot setup. A couple times I thought the gout was gone, but it was just the Celebrex doing it's job.

So it's still just a game of watching and waiting making sure my blood counts stay where they need to be. Luckily, I've moved beyond any sort of dwelling on my condition. Often times I forget that anything is even wrong. CML really only occurs to me in the evening when I take my medication or when I'm super tired for no apparent reason which has been my only real side effect. I've found that I can get past the fatigue by simply kicking my ass in gear and doing something physical.

Let's get off the health topic and talk about the realization that the Ohio State Buckeyes really are the greatest college football team on the planet. Yesterday's game was FANtastic! I couldn't help but pace the house blasting the Ohio State fight songs most of the day. I even made the family dress up in scarlet and gray. It was a lot of fun and for the first time in YEARS I woke up Sunday morning, post OSU vs. Michigan without a hangover! It was nice.

And best of all, I had a really cute Buckeye cheerleader by my side the whole game...

Posted by James at 11/19/2006 07:56:00 PM | Permalink | Comments

I’m happy to report that I have nothing to say. Blood work continues to come back normal and I’ve been feeling great! My foot is STILL hurting from the gout, but I guess it’s improving little by little.

Side effects have been non-existent and my energy levels have been real good. I’ve been feeling really strong at the gym and am still anxious to start riding my dirtbike again. Of course the gout had to pick my gear shiftin’ foot.

And that’s all I have to say about that.

Posted by James at 10/03/2006 08:43:00 AM | Permalink | Comments

Wow, it's been a while since my last post. Obviously I'm still alive and kicking. I've been trying to post something for a while but every time I start typing, I get interrupted; mostly by the 25 pound terror known as Laina Bug.

So far the Gleevec has been working wonders. My last blood test had my WBC count at normal with hemoglobin at just about normal and platelet count at just about normal. Monday will be my next stab session which hopefully will bring good news.

The side effects so far have been relatively minimal. I’ve been getting some subtle aches in my shins and forearms, but nothing much worse than what I normally feel thanks to the damage that has been inflicted to my body over the years. I suppose I have episodes of fatigue here and there maybe my eyes are a tad puffy but that could just be allergies.

One thing that I have been experiencing in the last week is gout. This isn’t a big surprise considering the Doc prescribed pills to prevent it even before I started on Gleevec. Gout is caused by elevated levels of uric acid in the blood which can form sharp crystals that get jammed up in your joints. This happens most often in the big toe. The influx of uric acid is usually caused by certain foods, but in my case it was caused by my plummeting WBC count. As the little WBC corpses decompose, uric acid is produced and the rest is history.

I wouldn’t wish gout on my worst enemy. It’s crippling and painful and even the weight of a bed sheet aches. Luckily however, OTC pain relievers like Aleve work pretty well. To supplement my gout prevention pill, I’m now on a gout remedy pill. It’s working really well and I plan on being mobile again by next week.

It’s been a little over a month since starting Gleevec and closing in on 2 months since my diagnosis. For the most part, life has returned to normal. I don’t dwell on my condition nearly as much and I’m back to thinking about the future. No more doom and gloom, which is good because that shit isn’t healthy.

Posted by James at 9/09/2006 11:53:00 AM | Permalink | Comments

Gleevec is rocking the house! The Oncology office called me this morning on the way to work. Cindy at the office got the results of my Monday tests last night and just couldn't wait to hit me with the good news.

In 3 weeks my WBC counts have gone from 211 to 23! The upper bounds of normal is 10.9. My hemoglobin is climbing (good thing) and my platelet counts are dropping (good thing). Talk about some good news.

And to top it all off, I've yet to experience any notable side effects. I had a couple sluggish days earlier in the week, but I attribute that to sleeping lousy. I think my body knows that we have a swanky, new memory foam mattress being delivered Saturday.

I've also been easing back into the gym. I had an awesome workout yesterday and had to call ahead to have them pull out the extra plates from the back room. Well, maybe I didn't do that, but I felt real good and strong. I figure I'll just start back at 3 or 4 days a week again.

This last month has been crazy. The spectrum of emotions I've felt is indescribable. It's been the longest month of my life, but at the same time the most incredible. The extreme highs (and lows), the amazing people I've met, the volumes I've learned... So many positives derived from one massive negative. I know that my story is very different than a lot of people before me with this same disease. Medical breakthroughs have cut me some major slack. I know it's still early and I most likely have some bumps in the road to come, but today I feel like the luckiest person in the world. Keep on truckin'!

Posted by James at 8/24/2006 09:48:00 AM | Permalink | Comments

I met with my Oncologist today to go over my blood work and measure Spleenzilla. I went in very positive, just about certain that I was going to hear some good news.

I started Gleevec on 8/3, so it has been 2 weeks today. Because Mondays are my blood work days, the Doc only had 2 CBCs (blood tests) to draw data from since going on the meds. My WBC count has gone from 211 to 150 in 1 week and my spleen is half the size it was before treatment. The Doc is VERY impressed by my progress in just 2 short weeks. She said "You couldn't ask for a better response." She was all smiles and so was I.

My hemoglobin levels are still a little low but climbing, so the nurse gave me another booster injection. I'm going to be upping my iron pills to 2 a day to help the hemoglobin along.

One thing that surprised me is that she was totally unaware of recent reports in the media linking Gleevec to heart failure. I told her to Google it and she did, on the spot. The articles were right there. Kind of scary, but it just goes to show that you need to keep yourself very informed and not take everything a doctor says as fact. She wrote me a lab request for an EKG on my heart to get an early treatment baseline. I asked for it.

Today was a good day. I can't help but feel blessed by all this and I feel great!

Posted by James at 8/17/2006 09:39:00 PM | Permalink | Comments

It has been 10 days since my maiden voyage on Gleevec. I've gotten over the initial jitters, but I'm still very much in tune to what's happening with my body. For the most part, it's been uneventful.

I had a couple days last week where I felt really tired and out of it, but that could have been my sinuses acting up mixed with a little lack of sleep. I'd have to put a check next to the swollen ankles side effect. They aren't huge or anything, just a little puffy. Either Laina's dagger toes are packing more of a wallop, or I'm bruising pretty easily. My ribs and sides have some sore spots where she must have stuck me pretty good. She gets a thrill from inflicting pain it seems. It's fitting that "Lain" rhymes with "Pain". All in all, I feel great.

I have an appointment with the doctor Thursday to discuss some things. Hopefully my blood will show improvement. Last time I was in the office they shot me up with a drug that boosts hemoglobin levels. Mine are still lower than they should be. I'm also taking iron supplements to help with the anemia. I haven't had a brown turd in weeks, but that's supposed to be normal with the iron pills.

Ever since finally accepting that I have CML, I've gone on living thinking less and less about it. I suppose that's the right thing to do... Not to dwell. For now, fear is non-existent, only the desire to get in shape and eat healthy. Some day when my spleen heads toward normal, I want to get on my bike again. I really miss riding.

Recently, I've been thinking more and more about how I acquired the disease. I've scoured my past for things I've done, places I've lived, jobs I've had that may have exposed me to something that caused this. I've found zero correlations, not that a correlation would change anything. I guess it's just the human desire to find answers and ask "What if?". It's probably a sub facet of the range of emotions to be expected when you face a heavy, life changing event like cancer. I'm looking forward to getting over it as well.

Posted by James at 8/14/2006 10:17:00 PM | Permalink | Comments

And an opportunity to feel a little better about yourself...

My friend Mary is raising money for The Leukemia & Lymphoma Society as a runner in the Walt Disney Marathon on Jan. 7, 2007. She is going to run 26 MILES!!! Here is an excerpt from her "Team In Training" page...

"Please email the names of your friends or family members afflicted by one of these diseases. I plan to wear a special bracelet for each name that I receive. This will help me to keep my eye on the ball as I work towards my fundraising goal. It will also keep me motivated during the long training runs I will need to successfully complete the 26.2 miles."

Thank you Mary for being a part of this!

Her donation page is here...

http://www.active.com/donate/tntcfl/tntcflMWillia

Posted by James at 8/07/2006 11:27:00 AM | Permalink | Comments

Yesterday was my first day on Gleevec. Today is my second. Tomorrow will be my third and years from now I will be in the hundreds and even thousands, I hope. I'm proud to announce that I feel nothing!

I'm sure it will take weeks until I experience any side effects, but that first pill reminded me a lot of college and some of the stuff my friends would bring around occasionally. You know, the weird stuff. Those days are long gone, but I experienced that same eager anxiety where every inch of my body was under heavy analysis. I must have laid on my back staring at the ceiling for an hour. "Am I getting nautious?". "What was that?". "Is that a cramp?". "I think I'm seeing spots!!!". Funny how your mind can play tricks on you.

I've opted to take the pill with dinner, logic being that if I do get side effects I could sleep though them. Silly? Probably, but I'm sticking with it. Last night was totally uneventful but I did have some crazy, nightmare'like dreams. The dreams were like sagas, very vivid and elaborate and unsettling. I'm not sure if that was the drug talking or what, I guess I'll find out tonight.

As I sit here, I'm about 2 hours into Gleevec pill #2 and all is calm. Laina is monkeying around my ankles and Wendy is frivilously attempting to call her back over. It's the weekend and it's business as usual at the homestead. I couldn't be happier.

Posted by James at 8/04/2006 08:13:00 PM | Permalink | Comments

I've had a prescription to Gleevec for nearly a week, but due to the fertility clinic visits, I've had no need get it filled. Today was the day to do that and oddly, I was nervous.

I'm anxious to start getting better but nervous because there is a slight chance that the Gleevec won't work for me. Then it would be back to the treatment scramble and possibly the hospital. I really, really would like to avoid that, but I'm ready to fight either way.

As I strolled up to the pharmacy counter, the nerves climbed. According to the average lifespan calculater, this visit was the kickoff to about 500 more. The experience really registered with me. This was the miracle drug that was going to keep me alive and out of the hospital. What would it look like? How would I react? How much would it cost?

Well, I had some idea of the cost. Pam at work looked it up for me. Luckily it was covered by insurance and it was only $25 a month. I could definitely cover that and with a smile. Good thing I had previous knowledge about the coverage though, what happened next was nothing short of shocking.

I walked up to the counter, gave my name, and waited around while she went scanning through the M's on the shelf. She grabbed the bag and spun around checking to see what I was going to owe. She looked at the bag, then at me, then at the bag, and back at me. I must not have looked like the high roller because she figured there would be no way I could cover the cost, a whopping $3,197 dollars. Yes, thousand!

I knew something was wrong and apparently she did too. They grabbed my insurance card to double check. They fixed the error and apologized for the surprise. Again, thank God I knew the price beforehand because my inner Slovenian (notoriously cheap) was gagging for breath. Relieved, I headed for the exit, but not without asking myself "What the fuck?".

I thanked the Lord on the spot for blessing me with a great job with great benefits, health insurance being one of them. But what about those without health insurance? Who can afford thousands a month for medecine? Nobody I know.

Here is a groundbreaking pill proven to save lives while redefining the methods of CML treatment. This pill is saving lives without pain and suffering, months of hospitalization, and without risking life and limb for a cure. I can't help but think back to the many months, maybe years I spent without any insurance at all. What about all the people working part-time or for employers offering a pittance for health insurance? I worked for those employers too, but I lucked out.

I'll refrain from interjecting much more personal opinion because I don't know the options that are out there. If anybody out there knows, please leave a comment and let me know.

I experienced first hand what my Dad went through when he faced a major medical crisis stone broke. They wrote him off as an indigent, but not without some strategy on our parts. He must have spent weeks in the hospital. I can't remember if he died before the bills arrived or if the hospital wrote it off.

I'd like to think people less fortunate than me have options. Thinking otherwise is downright frightening.

Posted by James at 8/02/2006 07:16:00 PM | Permalink | Comments

One of the things my doctor and I (and the wife) discussed at the last appointment was children. Apparently Gleevec has a tendency to tweak sperm which could lead to miscarriages and even birth defects. We'd both like to have another child in the future, so the only choice is to hit the fertility clinic, which I did today.

Overall the experience wasn't that bad. It was just like any other doctor's visit, until showtime. I was given a cup and pointed in the direction of a room slightly larger than a broom closet. It was actually a bathroom, but the TV threw me off a little. I'll skip the vivid details, but I can tell you one thing. There's no place like home! I struggled, but came out victorious.

The fertility clinic doctor wants me to come back 2 more times this week to "stock up". The next appointment is 7AM Thursday which will be excruciating. I can't even see at 7AM let alone "prosper". It will be quite a feat.

Saturday I will be fertility certified and ready to take my first Gleevec. I'm very excited! I don't know if it's a mental thing or what, but ever since the doctor told me about my spleen, my abdomen has felt pretty plump. I especially notice it after dinner when I assume "pole position" on the couch. No pain, just pressure. The Doc said the medication should bring the spleen back to normal size in a couple months.

The skies in Jacksonville today were awesome. I think every single cloud type was represented, including some bad ass storm clouds that poured down rain on the way back. I've never noticed the sky as much as I have since my diagnosis. It seems like every day I look up and see something beautiful. Maybe it's the time of year, but likely it's my new appreciation for life. It's too bad something like this has to happen to truly appreciate the planet we live on. Either way, it's great to be alive.

Posted by James at 7/31/2006 09:33:00 PM | Permalink | Comments

This article sounds very promising, except for the relapse part and the triple immune version of CML.

http://www.medicinenet.com/script/main/art.asp?articlekey=62513

Posted by James at 7/29/2006 06:46:00 PM | Permalink | Comments

My appointment with the doctor was supposed to be August 1, but some of the results had come in and she wanted to meet me earlier (July 27). An ultrasound on my abdomen confirmed that my spleen was in fact "huge". Actually the girl at the imaging center said my spleen was "biiiiiiiiiiiiiiig". Before all this happened, I never even noticed my spleen or that anything in my belly was wrong. I'm pretty lean these days and am sporting nearly a six pack, but after learning about the condition, it started making sense why my belly still bowed out a bit. I thought it was just how I was built.

It's hard to describe the feelings involved when your future, your life, your potential death will be revealed to you in a small doctor's office at 2PM on a Thursday. The roads and scenery you've witnessed hundreds of times seem almost fake. Everything moves slow. Nothing stands out. I never knew how cold hands could get or how empty a stomach could feel or just how important family is.

As we waited for the doctor, my stomach was going nuts, bodily functions battling it out for who would go first. Of course, baby Laina stole the show and really helped calm my nerves which were about to crack.

The doctor rolled in and hit me with the news... I had CML. She felt it was still in the chronic stage and that things were going to be OK. There would be no hospital. She was fantastic answering my questions and thoroughly explaining my situation. Although my spleen was "huge", she thought there was time for me to make arrangements with a sperm bank before going on Gleevec. Apparently, there have been cases of birth defects and miscarriages associated with the drug. We would like another child, so I'm awaiting my appointment set for Monday. It will certainly supply yet another colorful page in the book of James.

As I sit here now and as we walked out of the office Thursday, it's almost like I don't have cancer at all. I guess it's because I was in an emotional trench for the week previous. My condition is still serious. Heck, six years ago before the advent of Gleevec, I'd be in the hospital right now. I'd be getting chemo and/or radiation and looking for a bone marrow donor. Instead I'm sitting here in front of my computer feeling great, feeling positive, feeling blessed. God is giving me a chance, science is making it happen.

There is a small chance that Gleevec won't work for me, either because of intolerable side effects or it just plain don't work. The statistics say otherwise though with over 90% of patients responding. It truly is a wonder drug for those with CML and I am grateful as hell.

Posted by James at 7/29/2006 03:16:00 PM | Permalink | Comments

This MediQuick doctor hit me with heavy, heavy news, but a call the next day brought hope. It turns out, a hematologist took a look at my results. She felt that my results looked more typical of CML than AML. CML, although still serious, moves slower than AML. CML also happens to be a type of Leukemia where patients have benefitted hugely from a relatively new drug called Gleevec. CML and the potential to use Gleevec meant great things. No chemo, no bone marrow transplant, and best of all, no hospital!

But did I have CML? And what stage was I in? According to the doctor, my spleen was "huge" (another symptom of Leukemia). The only way to really find out was a bone marrow biopsy which was performed the morning of July 21 after four days of sitting and waiting.

The biopsy was not fun, but the pregame drugs were GREAT and I highly recommend. After three rapid fire shots in the left butt cheek, I was feeling fine. Even my assless gown didn't bother me. I just laid on my side in the lab room awake, but in this weird, dreamy state for about 45 minutes until the nurses stormed in. It was showtime.

I'll spare the gory details, but looking back, the procedure was not that bad. There was some pain, but the worst was not knowing how painful it would get. After about 25 minutes boring a hole in my lower back (actually hip) bone, they were done. I was "a bleeder", so it took longer than normal to get back into my street clothes. It was nice to be done and to see Wendy and Laina in the waiting room.

All I had to do now was wait for the biopsy results, which would pretty much define my future.

Posted by James at 7/21/2006 07:00:00 AM | Permalink | Comments