Friday, July 01, 2005

Update for Mom

It's been about a month and a half since my last Chemo treatment. I have not been updating the blog. I've resumed the life of a normal person - or as close to it as I can be with everything that's in the works. I've started a new job, we're buying a new house, the wedding planning is on schedule - we're catching up on everything that had to go on hold for a little while.

I've already forgotten how much we went through ; and reading back through this blog has helped me to remember. The American Cancer Society has contacted me and interviewed me - they plan on featuring my story on their site, so be on the lookout for that.

Stacy and I reflect on the bad times, but for the most part, we're even more appreciative of the good times now. There have been a number of moments when Stacy has suprised me and told me how lucky she feels to have the little wonderful times in life that we have together. I have to agree with her.

My Mom pointed out that some of you out there are asking for updates, wondering if I'm ever going to update this site again. Thank you for following my story - for reading about my thoughts - and thank you for your prayers.

I will not be updating this blog any longer - it's time to enjoy life and be thankful for what little time we have. My closing thoughts are the same as some of my original - life is, in fact, both short and precious - they key is finding the balance. I hope we can each find our own balance and appreciate what a wonderful gift we have in existance. I still think that life is very fair - even the most un-lucky among us have many more good times than bad. Remember on your darkest day that you've had many brighter days and with any luck, you'll have many more.

Tuesday, May 17, 2005

When a survivor meets a survivor in the wild

Over the weekend, Stacy and I were packing in the fun stuff and it was great. We were on the scooter looking at houses and going to brunch with Drew and Deborah - just enjoying a great summer morning in Atlanta. On the way home in the afternoon, we stopped by the Grocery to pick up all the stuff to make quiche for our make up Mother's day which we had postponed because Mom was traveling the previous weekend and I was bed-ridden still.

Enough background info - we were rushing through Publix trying to remember how much of what goes into a quiche, when a guy stopped me and asked if I was going through chemo. You'd think that it would be weird that someone stops you in public to ask something so personal, but it's not at all. Anyone who would have the gall to stop you and ask you that must have a story themselves, and I'm finding that the majority of survivors LOVE telling their story - almost like war veterans.

I told this guy that yes, I had just gotten out of chemo a few weeks ago and he gave me some great compliments about how well I'm doing. I took those very well because I am pretty darn proud about how much energy I have and how good I feel so far - I'm doing much better than I should be doing at this point.

Turns out that he is a leukemia survivor - the kind that doesn't need bone marrow transplants - it's a different kind that is much more survivable. Stacy later told me that his chances were about equal to my chances. He though that I had it worse off with the TC, and I thought that he had it worse off with the lymph node cancer - so we were both patting each other on the back at about the same rate. He has been in remission for about a year, which is the next milestone that I hope to get to, and it's a great relief for someone to reach the year mark - because it normally means that the cancer isn't going to come back in any major strength, even if it does come back after the year mark.

He brought up that he was a lawyer by trade before his diagnosis and he talked about how his life is completely different now, and how he has very different priorities than he ever had. The way he was talking about how his life had changed, I'll bet you that he was one of these pompous arrogant lawyer-type guys who only cared about his career and bragged about social status and had the country club membership and had no respect for anyone outside of their firm, and hated anyone above him inside his firm. Maybe that's a huge assumption on my part, but I'm telling you that he focused on this for a few minutes and it was almost like he was getting it off his chest. The point is that his life is completely different and after I told him that we were engaged, he looked at me and Stacy and said that we had already figured out what was important in life.

He had a fiance when they were in their 20's and the ended up breaking off the engagement because they were too young to get married - his words. They maintained a friendship in life, then later she passed from cancer - he didn't mention the type. Sad story. But now, this guy really has it together and he has a zest for life that comes across in a 10 minute conversation in the diary section with a stranger. When the talk came to an end, we shook hands and I said it was a true pleasure to meet him, and he told me that I made his day - then he said he was off to find some ben and jerry's ice cream, because he deserved that little pleasure in life - I couldn't agree more.

Stacy and I got back to our shopping and then it hit me - that guy made my day too. It was so cool to meet some stranger outside of the chemo room who I know has the same thoughts and feelings about life as I do now. Just some regular guy who knows how precious life is and who will take the 10 minutes to share some of that with a like-minded person in the middle of the grocery. That's pretty cool. As luck would have it, we ran into him again in the parking lot and I got to shake his hand again and tell him that I eventually figured out that he had made my day as well. We agreed that we'd be on the lookout for each other in the future, and went our separate ways to enjoy our separate lives - both enjoying our lifetime memberships in the cancer club.

Thursday, May 12, 2005

The Road Ahead

We went to see Dr. York yesterday, and everything as it should be. My blood cell counts are all doing pretty well. My WBC count is around 6500, on the low end of normal, but normal all the same. My red cell count is the lowest it's been all treatment, but it's still within tolerable ranges - and it should be low right now, I've been getting beat up for 3 months.

I brought all the staff flowers and put them in the chemo room so all the sick people could enjoy them too. That bought me a few hugs and I got to see a bunch of people who helped me through the last few months smile.

When we sat down with Dr. York, we were in the exact same room and seating positions as we were during our initial consultation with him. I said "Dr. York, three and a half months ago, we were all three sitting right here and you told me and Stacy that we would all be OK - and here we are!" It was a weird deja vu feeling, but in a really good way since he was right!

Here's the game plan. I see him every month, once per month for the next year. During those visits, we'll discuss my recovery from the chemo and we'll take blood to check my protein markers and see if the cancer is coming back. Every two months, we'll also to a chest CT scan to make sure nothing's funky in the ol' chest cavity.

If the cancer comes back, basically the sooner it's back the worse. The next course of action will be a bone marrow transplant, and that's super scary stuff. As Stacy explained to me - and she admits that this is only her interpretation as a student here - they will take out some of my bone marrow ( owie ), then they will give me a very high dose of chemo ( double-owie ), then that will put me into another neutropenic fever ( triple-owie ), which will kill anything and everything, then they will put the bone marrow back in me ( quad-druple-owie? ). My knees are weak just re-reading that sentence. On the bright side, Dr. York said that with numbers like mine, it would be very weird to see this cancer come back - and I know him well enough now to know that he wouldn't say something like that unless he were almost positive about it. No guarantees, but it's as close as a guy like me is gonna get from a guy like him at this point.

More importantly, I feel terrific. I have normal energy levels. I'm able to function almost all day without needing a rest. We ran errands after the Doc appt. - went to the PO and to Target and got some Starbucks and drove all around looking at houses for sale in Renyoldstown and Inman Park. Then Stacy and Mom went to the florist to pick out wedding flowers, I messed around on the computer for a few hours, then we all went out to dinner at Johnny's Pizza. Sorry for all the detail, point is I was on the move from noon until 10:30 and I was tired, but not exhausted.

Also, we fell in love with a tudor cottage in Inman Park and we're going to see it today - I should probably get a job before buying a house that I can't afford, but hey... um... yeah.

So, I'm already looking for jobs. I'm working on the resume and a few of you out there have helped me with that already - again, I really appreciate that. I'm excited about being employed again. I'm ready to have productive days again and I'm even a little bit excited about getting dressed every day and going somewhere - which is weird because I didn't like doing that before the cancer. My rule about not wearing pants might be coming to an end. I'd like to find a spot in a hospital IT group, but I'm seeing some interesting postings out there for regular businesses too. I think I'd really like some morally rewarding position, but I'm not going to hold out for one right now - I need to get back in the game as quickly as possible at this point - for mental health reasons as much as financial ones. I'm gonna go crazy sitting around this house for much longer.

I was telling my Mom last night when I walked her to her car after dinner, I feel like I've turned a corner. I've talked to a few of you about this recently, so I'm going on record now and making it official - so hold me to it! I've had some horrible health habits for the past decade of adult life. Somehow I never learned that health is something you have to work at. Growing up, I always thought of sports like I thought of church - you had to go X times per week just because. You know, on Tuesday night I went to basketball practice and on Sunday night I went to youth group - for no other reason than because my parents told me to - I didn't particularly like either one!

It's absolutley not my parent's fault that I thought this way, and I think I turned out marginally better because I went to youth group - not b-ball though, that sucked and I sucked at it and I still don't like it. Also I stand by my claim that any sport in which a team scores constantly is a stupid sport - points should take time, strategy, and talent to earn and in basketball, you basically watch one guy on a team have a good night and get lucky every night - that's the whole game - it should be called "who's gonna have a good night" instead of b-ball. It's stupid and if you like it then you are stupid too.

Back to what I was telling Mom. I feel like I've turned a corner, because now I see that there isn't a warranty with my body - I have to take care of it - and that's not some empty waste of time like basketball practice, that's actually my one and only, most important job in life. That means I have to exercise and get my heart rate up, ideally every day for 30 minutes or so. It also means that I need to eat right, which luckily I'm pretty good at already.

I need to watch the booze - I've been dry except for a handful of drinks during the past 4 months and I feel really good. It's amazing how good you feel in the morning when you don't drink a bottle of wine the night before. My new drinking philosophy is simple - have fewer, nicer drinks. At the next party, instead of having 6 beers I'll have 2 scotch's and when Stacy and I have a nice dinner, we'll have one bottle of $50 wine instead of 2 bottles of $25 wine.

I'm also planning on thinking of alcohol as part of the meal, which has been very effective for me in the past. If I have wine with dinner, I pair it with the entree and keep it to one or two glasses during dinner. Then when I move on to desert, I finish my wine and have coffee. In my mind, that stops the drinking process and rounds out the meal for me. That way, when we get home from a nice dinner, I'm much less likely to pop open more wine and continue drinking - and even if I do, at least I took a break for an hour or so with the coffee and desert course. This will be super easy to do, because Stacy loves having coffee at the end of nice dinners already - I'm always the one to spoil it and order more wine because I want to continue drinking.

In all honesty, you guys know that I've been calming down my lifestyle for the past few years now anyway. Does this mean that you'll never see me take another Tequila shot? Hell no, it will happen again ( bachelor party ), but it will be fewer and farther between as time goes on - and that was gonna happen anyway without the cancer. Most Men tend to calm down when good Women do things like agree to marry them. Also, as I get older, it seems less important to argue about nothing at the bar at night and more important to get things done in the morning.

In summary, the next year is going to be all about establishing a healthy lifestyle for the guy who never knew he needed it. It won't happen overnight and I will need help with it. When I first got sick, many of you pitched in and got me presents. I'm know I have the right friends around me because instead of a bottle of nice scotch, I was given a commercial blender to make protein smoothies. That's a perfect example of the person I was vs. the person I want to try to become.

Monday, May 09, 2005

Force Feeding and Bed Rest

It's Tuesday - and I'm up and out of bed for a few hours at a time today. I still have all the anxiety and my ears are ringing pretty bad, but I'm able to walk around the house and cook and do simple tasks like that now - woo hoo!

I've been taking it real easy ( not by choice ) since my last chemo treatment last Friday, and I wanted to talk a little about my get-better-quicker strategy. It ain't pretty, but it might help someone out there so here goes...

Sleep as much as you can. Sleep and bed rest help so much. You do have to get up though - I'm not sure if they qualify as official bed sores, but you will start hurting after laying in bed for a day - so even though it's hard, make yourself get up and sit in a chair or on the couch for a little bit. That breaks up the day too ;).

I've been very queesy lately - to the point where I've been taking compezine for anti-nauseua almost constantly since my last treatment. When you feel that way, the last thing you want to do is eat. I've taken the exact opposite stance and I've eaten as much as I can. I feel better sooner when I fuel myself, so I've stomached the uncomfortable feelings and so far I've been able to push through the sickness without incident. For me, it helps. BONUS: It makes you feel normal if you eat normal sized meals. Also, after loosing a little chemo weight, Stacy is letting me eat all the ice cream i want.

The pain in my arms from my veins is very distracting, and I'm not sure if there's any way to ignore it, but it's already starting to subside, and the bruises are going down - so I guess my advice is to remain patient and understand that the damage won't be undone overnight. I never tried any cold compresses or anything, though that may have well been a good idea.

The marks on my shoulders from the Bleomycin are still there in force and they look horrible, but they don't hurt so I'm not too worried about them. My blisters are all healing and don't hurt either. I'm starting to notice a few - and i mean a few dozen - hairs growing on my beard. I can feel them when I run my fingers against the grain. Nothing near a recovery, but it's something new anyway. Hair topside is scruffy, but still notibly thin.

Sunday, May 08, 2005

Last Chemo Treatment Day

Nurse Stephanie and the "Chemo King" on my last day in the chair.
I had my last treatment this past Friday. I showed up, late, as I normally do when I'm feeling bad - and as I walked around the corner into the Chemo room, I saw that all the Nurses had made a sign for my pole, a "Chemo King" crown for my head, and even a breakfast muffin to celebrate my last day! It was certainly unexpected and I was very appreciative. I tell you, these people are top notch - above and beyond until the bitter end.

I'm feeling pretty bad this weekend and haven't made it out of the house. I'm very nausious and tired, so I'm sleeping most of the time. Temp has been normal and hopefully that will stay consistant. My next appointment is on Thursday, to go get my blood counts checked again. Truth be told, once again, if I make it past Tuesday without an ER trip, I'm essentially in the clear. It's all upwards and onwards from here!

Wednesday, May 04, 2005

One More Day

Boy this week has been hard. I've just finished my second to last day in the chair - I slept through most of it. That's all I've been doing this week actually - I've been very tired, just waking up to eat a little bit and take more anti-nauseua meds. I knew I had started off a little below par this week, but man it's really taking it out of me. One more day in the chair and I can focus on recovery.

Tuesday, May 03, 2005

Grandparent Update

Both of my Grandfather's underwent surgery last Tuesday. I've now spoken with them both, and they are in great spirits and feeling better every day. My Father's Father ( Big Daddy ) had a minor procedure which I expected him to bounce right back from - still it's always good news for a person in their 70's. My Mother's Father ( Grampy ) had open heart surgery to replace his aortic valve. That invloves stopping the lungs and heart during the procedure, then restarting them afterwards. Needless to say, we were all very hopeful and worried.

I spoke with him last night and he sounds ten years younger. He's still hospitalized this week, but will be going home today and with some help around the house, he'll be moving around on his own in just a few weeks - about the same time I'll be moving around consistantly again! He had his typical "zest for life" in his voice again - I can't explain it on paper, but you could tell he felt better just by hearing him speak. He was laughing and making jokes and wishing me well in finishing my battle. It's it amazing what the surgens are capable of these days?

Being the first-born of my generation, I'm lucky enough to be old enough to begin to understand the dynamic of multi-generation family by getting to know my Grandparents at an adult level. Talking about the great depression and WWII and having a drink with your grandfather is priceless. Understanding the tough times that your family has been through really helps me understand how lucky we truely are today. And hearing Grampy's voice sound so much like I remember it instead of the slow sad decline for the past few years - it's like a relief coming off your shoulders that you really didn't even know you were bearing.

Monday, May 02, 2005

Week Ten - Surprise Ending!

Back in the chair today, I'm feeling pretty OK with it. I met with Dr. York, my Oncologist, this morning. I'm having a few skin problems at this point in my treatment that I discussed with him. I have discolorization of the skin on my shoulders - it looks like someone tattooed me with olive green ink in big blotches all over both of them. I have very dry skin in my hands and arms, and my beard area of my face and neck itch like crazy - it wakes me up at night and I have to apply lotion. One vein in my left arm has bruised or burned or something - it causes a sharp pain when I rotate my forearm, so that wakes me up too. I also have a localized heat rash all around my belly button! Strange stuff in my mind, but he said it's all related to one of the drugs I'm on - Bleomycin.

So, in response, he took me off of it completely! He said it is the least effective of the chemo meds that I'm on, and since I'm ALREADY IN COMPLETE REMISSION (!), he's pulling it from my remaining schedule! This is only significant because I was getting the Bleo injection on my "short" weeks, every Monday. Now that it's off the schedule, I won't be done in three weeks from today, I'll be done THIS FRIDAY!

Before we get all crazy happy, I must say that the Bleo doesn't make me feel bad at all, as far as I can tell. I feel OK after the Monday injections, so they really weren't such a big deal to come in for. Being done 2 weeks early is great, but I'll still be using that time to recover from my big week, which started today. Even so, it's awesome news - and to hear those sweet words "complete remission", well that's pretty fantastic. After Dr. York told me that he was pulling the Bleo, I suggested that we just pull all of it since I'm doing so well - he chuckled and continued writing his notes - the universal doctor mannerism for "no way".

So begins the fourth and last hard week - week 10 - life in the chair still sucks, but I'm on a short countdown now. The only challenge left now is making sure the WBC booster is as effective as it was last cycle, so that I stay out of the ER. Wish me luck - the end is in sight!

Monday, April 25, 2005

Starting Week 8 - a good week!

I'm feeling great again - real normal. I've stopped taking all the supporting meds for anxiety and nausea, and it feels great to not be chemically messed up for a few days. I'm able to fall asleep on my own, which was my main concern. During the first and second weeks of my treatment, I take ativan almost every night to knock myself out. I feel so much better when I get a full night's sleep during those hard weeks.

This weekend was great - On Friday, Stacy and I went looking for wedding bands at the Merchendise Mart. Holy cow that place is insane - it's the wholesale/retail exchange for pretty much the whole southeast US. So they have everything you've ever seen in any store. OK, that's an exaduration, but it is a HUGE 3 skyscraper, 20 floor shopping mall in the middle of downtown Atlanta. We found some great looking bands - exactly what we've been looking at elsewhere - for much better prices. Thanks to the Dot-Coms for the hookup on passes! We're going back tomorrow, on Tuesday, to purchase.

Friday night, we went to the Braves, Phili game at Turner Field. It was a great game - tons of hits, I couldn't believe it. There were only a handful of strike-outs all game. Braves had a few homer's and ended up winning, even though their closer took forever to finish the game. I know it's lots of pressure, but come on - you can throw a strike buddy, it's your JOB! I was exhausted after watching that, we hit the sheets around 11.

On Saturday, we were able to get out and go to Allison and Dave's wedding shower at the Four Seasons. That was sooo nice. We had a great lunch and spent some time with everyone. It was super nice.

Saturday night I was still feeling run down, so Stacy and I kept it low key and got some pizza at Savage and then went book shopping at borders - it was a fun date night for us.

Then on Sunday, Stacy had to study and My parents came down to go to lunch. It was great to see them outside of a hospital setting! Sunday night, we attended a Passover dinner at Allison's parents house - very gracious of them. Allison's mother puts on an incredible feast every year. I'm still full of Matzah!

That's the weekend update for everyone. I'm doing very well and I'm totally excited about having a week of feeling good to get some things done. I'm all about being lazy, but it sucks to have things to do and not be able to do them. On the list: book honeymoon, purchase wedding bands, and have some fun outside!

Wednesday, April 20, 2005

Waking up NOT in the ER...

It's Wednesday morning after my long week and I woke up in my own bed, NOT in the ER! It's an awesome feeling to not have an IV in. To not have 20 different people poking and prodding me every hour. To cook my own breakfast and eat it at my own desk. It's the simple things in life...

This is week 8 - and it's a special one. Week 8 is the second week in my third three-week block. It's on these second weeks that I hurt the most, because it's when the chemo from the hard week, the first week, really catches up to me and starts to take it's full toll. Week 2, week 5, this week - week 8, and week 11 are all second weeks in my blocks.

On week 2, I had problems breathing and went to the ER and got shot full of Morphine and Toridol. On Week 5 I had the 104 temps and went to the ER and ended up doing 4 nights in the chemo ward. This morning I'm drinking apple juice and looking out the window at some incredible blue sky and listening to the birds sing.

I like week 8 better than 2 or 5.

Aside from any ER-required complications, I'm feeling slightly better than I normally do on these weeks. The key difference has been sleep. I've been very tired and slept most of Monday and Tuesday. On weeks 2 and 5, I wasn't tired - I was awake and fatigued.

This morning I woke up and felt semi-normal and rested. I have some tightness in my chest, but nothing to worry about. I have some discoloration on my shoulders - they are a light grey-green color and splotchy - I've been told it's just a side-effect and will go away after treatment - still scary looking though. I have had a medium toothache for the past 12 hours - this is new - and it's bothering me a little. I've called it in to the nurses and if it stays with me for another 24 hours, I'll have to go to the dentist. I think it's sinus related though, because if I press on my right molars I can alleviate some of the pressure and I hear a little pop like when you're on an airplane. I've dosed up on ibuprofen and psudoephedrine to help me through it. I've also had some tummy cramps in the past 12 hours, most likely related to some chai tea that I had 2 cups of last night - first caffeine I've had in a while - I must say, not worth it.

On the plus side, I've felt up to getting some paperwork done this morning. All of my healthcare bills are now in order and paid up. I have my retirement accounts transfer process rolling from my old employer. I even paid my COBRA payment this morning. I still can't believe they make you write a physical check and mail it in. My desk is still a mess, but I tied up a bunch of loose ends this morning - all those little things bother get to you after a while - it's good to have them done.

Monday, April 18, 2005

WBC Hits 20,000!

It's the Monday after my hard week - normally when Stacy has to drag me to chemo for my Bleomycin shot. While I'm far from chipper, I'm much more active than I normally am on Monday - but I'm still hurting. I slept in this morning, getting up to make an omlette and then returning to bed, and took it easy until my 2:30 appointment.

Once there, they took a blood sample and we waited for the moment of truth - how was I doing with the booster shot that was supposed to keep me out of the ER this week...

My white blood cell count is at 20,000! Normal range is between 4 and 11k. This is a very inflated number, and it's only this high because of the booster shot I got last Friday. In fact, the number is so high that normally it indicates a problem. Basically for me all this means is that the booster worked like it was supposed to - and the numbers will level out eventually.

I knew it before they told me, but it was still reassuring to hear. Nurse Stephanie gave up a high five, shot me full of Bleo, and sent me on my way. I'm tired and still recovering, but I'm pretty confident that I'll be sleeping in my own bed this week, and that's enough for now.

Friday, April 15, 2005

Multi-purpose chemo hat system

hat functioning in the awake position...

hat functioning in the sleepy-time position...

Numbers are good, we are go for booster!

It's been an exhausting week - I spent today and yesterday in the chair sleeping, and sleeping more at home. In fact, I've been sleeping more than meow meow lately. My veins hurt - they're "tighter" now - like my body just doesn't like IV's anymore, so it's made me very sensitive to them. I'm very glad to have had the IV taken out today. I've managed to keep my weight up at 159 lbs. - that's only a net loss of 10 lbs. since we started treatment, and I'm pretty happy with that.

Remember those tumor markers in my blood? They took those numbers again at the beginning of this week. Both are well under normal levels at this point! My Alpha-Fetoprotein was at 2.5 and should be less than 6.1, and my Chorionic Gonadotropin was less than 2 and should be less than 5 - so I'm doing very well at this point.

My WBC started off over 6K this week - normal range is from 4 to 11K, and I'm sure it's much lower now after a weeks worth of drugs, but I got my booster this afternoon, so hopefully that will keep me out of the ER and Hospital next week. I've been getting bad on the Monday and Tuesday of my second week in the cycle, so if I make it to next Wednesday without being admitted, we have something to celebrate.

Wednesday, April 13, 2005

What are the chances

I've been thinking about the events leading up to my diagnosis and surgery and chemo treatment lately. Stacy and I had this year planned out to be a big one - we were going to be making a lot of changes and taking on some risk in exchange for a potentially huge reward. Basically, we were going to sell the house and buy a new one, which we planned on tearing down in a few years once we had more capital coming in to use to build a new house, which we would then sell for a profit.

That's all been postponed.

But in preparation for that, I refinanced into an interest-only mortgage last year to free up some monthly cash, which I then used to renovate the bathrooms and kitchen, so that we could fetch a higher price in resale of the townhouse. Now that that's done, my mortgage payment is still very low - which helps when you no longer have income.

At the time of my diagnosis, I had an offer on the table for a property down the street. It was contingent on the sale of my townhouse, but had it all worked out, my mortgage payment would have doubled from what it is now. That was part of the plan, but again... The whole no longer having an income thing would have made short work of it.

Come to think of it, I had my surgery on 11FEB05 and was terminated from my employer 28FEB05. I wouldn't have let myself have a gap in insurance, but I was researching indemnity insurance before my diagnosis, which would have left my deductibles in the thousands instead of the co-pay system that I have now. Hey, what's the worst that can happen to a healthy guy in his 20's?!!!

In short, a whole lot of things fell in place in February that could have gone the other way, and I'd be in some pretty hard times if they had.

Week 3, Day 3

I've been trying very hard to not take naps during the day. I like sleeping through the night and being able to achieve deep sleep - I think that's called stage 3 sleep where you have rapid eye movements and you actually get the best rest of the night.
Anyway, I'm very fatigued today. My Brother picked me up from chemo around 1pm and I took him to lunch at Philly Connection. That greasy foot long didn't stand a chance. It's day three of my tough week, and that means that the IV comes out and I get to take a real shower, just like a big boy! I did just that when I got home, and then I was headed for nappy-land. Full tummy, clean body, no responsibility - only one thing to do.
Hopefully this won't disrupt my REM tonight. I'm still exhausted so I'm guessing not.
Especially since Keith just brought me a pizza from Savage - full belly again, a shower would do me in right now...

Monday, April 11, 2005

Week seven - back in the chair

We had a great weekend. Visiting my Sister in Athens on Friday and Saturday was awesome! Stacy and I met with the man who's going to marry us, Rabbi Gerson, on Friday. We had to delay our meeting with him due to some ironic tummy troubles from Stacy instead of me! Luckily, he was able to rearrange his schedule and we were able to have a very productive almost 2 hours of conversation. He has a very nice temple right inside Athens - reminds me of our family church growing up. He's a very open and compassionate man, and he seems to already understand that we recognize our marriage as a Godly commitment and want to convey that in our ceremony. I have a very good feeling about it. Incidentally, Rabbi Gerson will also be marrying David and Allison a few months before us - that's how we got in touch with him.

We walked all over downtown Athens on Saturday morning and had a great breakfast there and did some shopping. Getting to travel a little was great, even if it was just an hour away. Saturday night, we had a great dinner at The Buchters', and played some games for a while - good fun. On Sunday, I took Stacy out to a nice brunch on the scooter, and then we checked out the Dogwood Festival at Piedmont Park - it was a perfect day - 70 degrees and clear. We got lots of walking around in and some resting in the shade with the familiar Piedmont crew. I made a simple hamburger dinner and Stacy and I watched our Sunday night shows and relaxed a little. It was a great weekend.

And now I'm back in the chair.

I'm not looking forward to feeling bad again - I really really liked feeling normal this weekend. But, I'm counting the days down now - we're at week seven out of twelve - more than half-way there. I wish that I wasn't counting - it's too far away to get excited about. Numbers look good today, WBC over 6K, and I should be getting a booster in the next few days to keep those numbers high. Because of that, I'm cautiously optimistic that I'll get through the next two weeks without an ER visit.

It's a weird feeling coming back here and getting hooked up after feeling back to normal. I'm able to feel when the bad stuff is going into me - that might just be because my veins are so much more bad off from the hospital stay still. I don't want any more IV's - I feel like I've had enough at this point. It's a necessary evil, I know.

The TV in the chemo room is tuned to the history channel - they're showing a documentary on some Allied Air Force prisoners of war who were incarcerated in concentration camps. Nothing like brutal POW treatment to cheer up some cancer patients. I'm guessing the point is that life could be a lot worse.

What Fatigue Feels Like...

Stacy asked me yesterday what my thoughts were going into chemo - without hesitation I said that I just wanted to know how it would feel. You read about bad fatigue when you read about chemo. What does that mean? I'm sure it feels different to everyone, and some people are effected more than others, but I think I'm qualified to try to explain how I've felt so far.

Fatigue, to me, feels like 3am tiredness - the sort of tiredness that makes you say "oh man, why am I still awake?". It's a like overdoing a workout at the gym minus the specific muscle pain - you're way tired.

Also, it doesn't come at the same time every day. One night you might crash at 8:30 and the next you might be up until midnight. It will hit you all of a sudden too, and no amount of cold water to the face or caffeine to the body will help - you will just need to rest.

Because of this, I don't drive myself to chemo. I don't drive at all during my tough weeks - because of the nausea and the fatigue - they can both sneak up on you quick. I try to stay close to home - even when I'm feeling OK enough to go out, I keep the trips close to home and quick, just in case.

Wednesday, April 06, 2005

at home in my office - this is just to show you guys that i'm in better shape than in the last picture...

About the Smoking...

This is an email that I wrote to few friends of mine this morning. Last night we went out to dinner for Lisa's birthday at The Inman Park Patio, and I made made fun of a few smoker's while who stepped outside to smoke while we were there. I decided to write to them to explain and appologize this morning, and I think that the text is also something that anyone reading this blog who smokes should read too. Here's the email text:

Hi Guys – Please read this entire email – it will be uncomfortable, but it’s very important to me that you read it all the way thorugh.

I wanted to apologize to you guys for my lashing out last night about the whole smoking thing at Lisa’s birthday dinner at The Patio. I know that I’m being hypocritical and unfair in telling you guys to quit smoking. I want to explain my thought process on the whole thing – not to justify my actions though, just to let you know what I’m thinking as your friend. I also want you to know that my family isn’t immune from this ridicule either – I’ve given my Dad and Brother a real hard time with the smoking too. When you get down to it though, it’s none of my business what anyone else does with their lives and I recognize that. I’m also going to copy the text of this email to my blog for everyone else, smoker and non-smoker alike, to see.

Before all of this cancer stuff started I had smoked for about 12 years. I had quit dozens of times for stretches up to 5 months, and had always somehow justified starting again. Nicotine is an evil bitch-god, I’m sure we can all agree on that. I enjoyed smoking – I know that I still would enjoy smoking if I started again, but now I realize that I’m mortal and this whole life thing is finite and cancer=chemo=extreme pain. Here’s the bottom line: I don’t understand how anyone who knows me could see the pain and the hell that I’m going through, and continue to do something that will not only most likely give them cancer, but will give them a worse cancer than I have.

I have a 10% chance of dieing from my cancer and it scared the hell out of me until last Monday when I got the news that we’re kicking the cancers ass, and therefore it would be very very strange for it to make a comeback and kill me, but – if you develop lung cancer, those odds are reversed and you have a 90% chance of dieing and also a 60% chance of dieing within a year of being diagnosed – it’s much more likely that you will die than that you will survive, and it’s more likely that you will go quickly and not even have the chance to fight.

Googled Stats from credible sources, paraphrased here:

• You have a 50% chance of dieing from smoking-related diseases if you continue to smoke. Tobacco use is the number one preventable cause of death in Americans.
• If you get screened every year for lung cancer, there’s an 80% chance that you’ll catch it at an early enough stage to save your life. Any of you do that? Didn’t think so…
• Smoking causes 90% of lung cancer deaths.
• If a non-smoker spends 6-8 hours per day with a smoker, the non-smoker’s chances of developing lung cancer rise to between 20% and 40%.
• 60% of lung cancer victims die within one year of being diagnosed.

I’ve heard all the excuses and hell, I’ve used most of them myself in the past.
• Fact is that it’s great for your general health to exercise 30 minutes per day, but there isn’t a trade-system where you can excuse something like smoking because of it. It just doesn’t work that way – you’re sucking carcinogens, one of the worst cancer-causing agents known to man, directly into your lungs – no amount of cardio will help that.
• Smoking is pleasurable – chemically it makes you feel real good in the brain – living to see your great-grandchildren has to be more pleasurable. I can say with authority that chemo is not pleasurable at all.
• True, the last 10 years of all of our lives are more than likely not going to be the most comfortable decade for any of us, and we are all going to die of something, but this is not what you want to die from. Cancer beckons Chemo which causes some of the worst pain and suffering I’ve ever gone through – If I were in my 70’s instead of in my 20’s, I might not have made it this far. 104 degree temperatures and not eating for a few days gets less survivable as you get older, as does a zero white blood cell count – that’s how people die from the flu.
• If you have children and you smoke around them, I will kick your ass when I get my strength back. Not only are you sacrificing their health, you are making a subconscious impression on them that tells them smoking is OK. There are no exceptions or excuses.
• If smoking is your one vice in life and that makes you feel OK about it, get a new vice. Make your new vice running or biking or beating up people – anything is better than the smoking. Well, not anything, but you get the idea.
• Life is short and you should do what you want to do, but smoking will make your life shorter and more painful toward the end even if it doesn’t cause the end – there is no question about it.

I know that ex-smokers are the worst at smoking lectures, but I’m honestly coming to you not as an ex-smoker, but as a cancer survivor. I don’t wish this stuff on my worst enemy, much less my best friends. I love you guys and anything I can do to extend our time together is important to me. Please, take a deep breath, and take a few minutes to re-read this email and really let this stuff sink in – I’m not making it up and it does apply to you. I will continue to ridicule you as long as you continue to smoke, not because I’m an ass ( I have other reasons for being an ass ), but because anything I can do to knock you down a little bit and remind you that this is the worst decision you can make in regards to your health – anything that I can do to extend our short time together, I will do and I will continue to do out of love.

Thanks for reading an uncomfortable email – I don’t expect it to be life-changing, but I can always hope that it might help in some way.

:Bill McDaniel

Tuesday, April 05, 2005

The Incredibles

My Friends are Incredible.

I've gained a new appreciation for life in general going through this, but I'd like to write about my friends for a second. I've heard that you really find out who your true friends are when you go through something serious and bad. I know a hundred people who would go have a beer with me and celebrate greatness - how many do I know that would hold me while I'm sobbing?

Turns out that I know many.

My friends have helped me through this in ways that I'm not sure I can ever tell them about. I have the best friends in the world.

I will not name names - they know who they are. The ones who have stood out from the pack and gone above and beyond. It's not that they've done anything that sacrificial either. They've just stopped their lives for a short time to help me and comfort me. They've brought us food so that we could rest. They've given us inspirational and helpful gifts. They've taken time to ask for updates and they've prayed for me.

I'm a very independent person. I hate the idea of charity unto myself. There are people in the world who can't feed their children - go help them. I'm upper middle-class and I'm one of the few people who recognize how extraordinarily lucky I am to be where I am in life. I know that my life is rich in many ways. German car rich, not Italian car rich - Virginia Highlands rich, not Druid Hills rich - but rich all the same...

A wise man once told me to expect the best and prepare for the worst and that's how I've tried to live my life - this is my rainy day, and I'm lucky enough to have had the foresight to prepare for it. I'm not going to loose my house over this. I'm going to be financially OK once all of this is over. Sure, I'll have to build up the reserves again, but there are people in the world who live paycheck to paycheck - some of you reading this live that way - think about what you would have to do if you got sick like I got sick. Many people go bankrupt. If my condition worsens, I could still go bankrupt - even with all my preparation. Please take the time to think long and hard about that - a little planning could save your family a lot of trouble.

I've had two friends approach me about finances throughout this. My family has as well - another blessing to count, but it's different. I don't want to say that you expect your family to be there, but it seems to be part of the job. Friends on the other hand aren't required to assist you in your money woes. Two of mine did. And not only was I lucky enough to have two friends who volunteered to have that difficult conversation, they represent many more friends who have discussed my situation together. I have friends who take the time to stop their lives and work through my problems and offer up solutions - that's incredible.

I dare say that next to my relationship with Stacy, that's my greatest treasure in life.

Cancer and a Life Philosophy

I've been working on a life philosophy throughout my treatment and I think it's time to share it, this being the day after the best day of my life. I think that going through and beating Cancer has to change your outlook on life. To be honest, I'm still not sure what I think about all of this stuff. But that's OK, because I'm not done with the war yet - and with the news that I got yesterday, I've got a long lifetime left to ponder my existence.

For right now though, I think that there are two schools of thought to this whole terminal illness thing. I think that you come out of something like this with one of three basic ideas, detailed below:

1) LIFE IS SHORT. I could go at any time, and there aren't any guarantees. Screw retirement plans and long-term investments. Forget about health and longevity. If I want to do something, I'm doing - up to and including things that might even be bad for me or illegal - I don't have time to make sure it's OK long term! I'm going on the vacation of a lifetime every year from here on out - I could be gone at any given time.

2) LIFE IS PRECIOUS. I need to do everything that I can do to extend it. I need to take the best care of myself that I can. I should be exercising and eating the best things possible. I should be getting the latest tests from my Doctor. I can't do anything that's bad for my body. Forget about doing anything risky too - I need to save for that next rainy day that will come, because my life is fragile. I can't go on the vacation of a lifetime - I'd rather save that money in case I need it for treatment later on. I must prolong my life as much as I can.

3) Some combination of the above two ideas.

I hope to land somewhere on the third idea. I don't like to be on any extreme level - I try to be a middle-of-the-road guy. I'm pretty impartial on most issues.

Abortion? I'm not a woman - seems like a woman should have a choice with her own body.

National Deficit? I'd like to see our country have as much in the bank as we need, but as long as confidence in the dollar is reasonable high - utilize your credit - just don't go nuts like a college kid.

Gay Marriage? What do I care? I'm glad you're in love - is it gonna cost me anything? Even better.

Life is short and life is precious. It's too short to waste. It's too precious to waste. There must be a middle ground - I intend to find it.

Monday, April 04, 2005

Even in my darkest hour, I will find a way to get online... Taken on my second to last day in captivity at Piedmont. Note the biohazard bag taped to my arm to seal off my IV.


Today, Monday, The 4th of April, 2005 is hands-down the best day of my life.

To start, I felt almost normal today - my blood cell counts are higher, still not normal, but I was able to remain active all day and not need a rest. I had a very productive morning and went to my chemo appointment at 2pm. I was nervous, didn't want another IV. My arms are destroyed from the hospital - and I'm a little regretful that I cancelled that port surgery. I'm down to 155 lbs. - that's a net loss of 14 lbs. since I started treatment. I have felt so incredibly bad for the past week that I didn't want any chemo today. I took it like a man and laid down so I wouldn't faint and held Stacy's hand real tight while they took my blood sample.

Nurse Stephanie came back and told me that my counts are still going up and will double again soon. Better yet, when I asked for her help in developing a system to determine approximately when my counts will hit the floor and rise up again, she explained to me that it won't be as bad as it was last week ever again. See, my counts went WAY down last time right before they gave me the WBC booster shot - and the type of cells that the booster needs to work with weren't there - so the booster basically did nothing for me. This won't happen again, because now we know how my immune system responds to chemo, and now those cells that the booster works with are there - so they'll be able to give me the booster in time to actually do something.

This is HUGE, because I've figured out that my out of body feelings of horrible sub-human pain and sensory perception problems and chest pains and night sweats and heat rashes and anxiety attacks are all related to my WBC count being way low. I'm sure it's more complicated than that chemically, but it's all related to my having a deficient immune system.

I had resigned myself to face the music and deal with feeling as bad as I felt last week - even if it meant going through more ER trips and staying in the hospital - totally worth it for the payout. But I don't have to now and that's big - now I know that the worst pain is over - I've already done it! I'm half-way through chemo and I know what to expect for the second half. There are no guarantees, but logically we are now armed with the knowledge to move forward in a much safer strategy than we had to start with. Chemo is a chemical cocktail that can really hurt, and everyone is different - the human body is really delicate and this stuff shreds it - but now we know how mine works a little better.

I equate this to the Allied deciphering of the "Enigma" machine during WWII. The Axis used the Enigma to transmit encrypted messages to the field. The Allies broke the code, and used the information they intercepted to win the war.

Today we broke the code.

We also know that my body freaks out when my WBC counts hit zero - so no more of that.

While in the hospital, Dr. York told me something that I hadn't heard previously. I don't know if he just didn't tell me for whatever reason, or if he did tell me and I forgot, but after my first 3 week round of chemo, they took my blood enzyme levels again. Remember, those enzymes determine the level of cancer in your bloodstream. He told me that my numbers looked really good. At the time, I felt horrible, so I didn't pay much attention.

Today at Chemo, Stephanie showed me the numbers. My Alpha-Feto Protein before starting chemo was at 30 ML and a normal person's is at 6.1 or less. After my first cycle of chemo ( I have four cycles total ) I was at 6.2. My Chorionic Gonadontropin level was at 2383 before chemo and a normal person's is at 5 or less. That's not a typo - 2383 is a very high number for this. After my first round of chemo, it dropped all the way to 30.

Keep in mind that was after my first round of chemo - today I finished my second round to make me 50% done.

Nurse Stephanie called my progress so far "remarkable".

I burst into tears of joy. I've never cried like that in my life. I had this incredible emotional outburst for 30 minutes strait in the chemo chair. Nurse Stephanie said that I was going to make her cry. I looked her in the eye and told her that when I die, I will remember this day and what she told me. I thanked her for helping me, and thanked her for doing what she does with her life.

I found Dr. York, my Oncologist, and accidentally burst into tears with him too. I choked out what I wanted to say, and thanked him for saving my life, and thanked him for dedicating his life to healing others.

There is no more admirable use of a life. These people have made it so that I can continue living. Without people in the world like Dr. York and Nurse Stephanie, I would have died from this.

The War isn't over, but it's just a matter of time now. 6 more weeks to be exact.

Today is the day that I beat Cancer.

Today is the best day of my life.

Headline: Life actually fair

I had a revelation in the hospital - Life is a fair trade. You get a bunch of good days and sunshine. You get to do things like fall in love and run and see the blue sky and swim in the ocean and in exchange for all of that, you have some crappy days in the hospital and feel like dog shit and you have some real serious pain. But most of the time you have the good days and that's pretty fair.

There's no bargining on this trade - and definately no backsies - but think about it - it's more than fair. There are so many more good times than bad times.

I've taken something that Fran wrote me in a card - Cancer builds charactor. Just like the first time you get laid, the first job you get fired from, or the first time you get arrested - it's one of those things that define who you are and who you will become - and you'll never forget it for the rest of your life, fair as it may be.

An Ode Owed to Stacy

There comes a time in every mans life when realizes that he made the right choice with the fiance. He's very proud that he didn't screw something this big up. He wants to tell everyone about it - like a peacock on top of a flagpole on top of a monument!

My Fiance is amazing. Stacy has borne the worst duty in this war. It's her job to take care of me when crazy shit happens. It's her job to rush me to the ER and to hold me all night when I'm in the worst place I've ever been. Nobody gives her any drugs to make the pain and the anguish go away. She's left there once I stabilize to try to relax a little bit, but she must always be ready.

My mother deserves a lot of credit here too mind you, she's been integral to my survival the past few months as well - but I think that's sadly part of the whole mother-hood deal - good with the bad. I'm lucky enough to have her close enough where she can and is willing to assist. Don't worry Mom, you've bought your way out of the "bad" nursing home. Tell Dad he needs to quit the smoking if he wants out with you, though... Just kidding Dad, but seriously follow my lead and quit smoking.

Back to the incredible Fiance - she's developing into this state that I like to call "mega-mommy-mode". Stacy recently manifested an amazingly accurate .2 degree forehead kiss thermometer. We tested this in the hospital numerous times and she seriously was that accurate. Word on the street is that she's secretly developing a lick test to determine nutritional needs. Along with our much-improved appreciation for health and life, we're arming ourselves to become quite good parents.

I couldn't possibly be more thankful for Stacy. Her character has been proven time and time again through this ordeal - she is the strongest woman I have ever met. She is my best friend and my crutch that holds me up - and I've never expected her to do any of it - she just does. She is truly an incredible person.

Hospital Systems Design Comments

Observations from the inside:

The patient reporting system allowed for vitals only every 4 hours. So my temp changes couldn't be recorded as they happened, and I had to write on the whiteboard in my room myself when my temperature was high! In fact, since they couldn't record it, the Nurses didn't come by unless I called, so I ended up taking my own temp and logging it myself! The Nurses would then add my notes to their notes, but the Docs wouldn't read their notes! They couldn't take the time to look beyond the 'puter screen - so then I had to take time to tell Doc myself!

The wireless devices that the Nurses use for tracking meds didn't give enough info to different departments. For instance, the Doc couldn't see how often i had taken what! Again, I had to inform the Doc every day of what had actually transpired!

The Nurse call system only alerts the charge desk. After a patient presses the intercom button in their room, they tell the charge desk the problem and the charge nurse makes a second call over the intercoms that goes out to all rooms looking for the assigned nurse to the patientes room! Pointless! No update to the patient in the room occurs, and there isn't any accountabiliity to the charge nurse desk, the patient ends up calling again, and a second nurse find call occurs because nobody knows what's going on and the patient is left asking what happened!

These are the frusterations of chemo ward...

You Call This Hospital Food?

Quick note - the food at Piedmont Hospital was incredible. I had a consultation with a Dietitian on the first day I was admitted - she asked about any religious or ethnic preferences as well as my personal tastes. After finding out that my perfered diet of steak and red wine was not only unavailable, but incredibly unhealthy for my body, we agreed on a sensible diet considered normal for cancer patientes. Every morning someone came to MY ROOM and took MY ORDER for lunch, dinner, and breakfast for the following day! Granted, the order was from a limited menu of just a few choices, but still - pretty nice to have a choice at all!

The food was excellent, and came with a printout of exactly what you were getting. I saved a few of them and I'll dictate them here for you:

Salt Pepper Sugar Kit
Orange Juice
2 Jelly's
2 Scrambled Eggs
2 Bacon Slices

Salt Pepper Sugar Kit
Jello Salad with Fruit
Apple Cobbler
Iced Tea
Lemon Packet
3oz. Baked Chicken Breast with Gravy
Dinner Roll
Mashed Potatoes
Green Beans

Salt Pepper Sugar Kit
Jello Salad with Fruit
Iced Tea
Ice Cream
Lemon Packet
2 Fried Chicken Legs
Dinner Roll
Mashed Potatoes
Chicken Noodle Soup ( by request! )

I mean holy cow! Keep in mind that these people also had to work with my dietary restrictions while my blood cell counts were low - nothing with any sort of bacteria. Hat's off the anyone you ever meet who works in the food services division at Piedmont - those guys are top notch!

The Chemo Ward

The Chemo Ward was great! It was a hospital with no rules - basically the staff knows that everyone in there feels about as crappy as a person can feel all the time, so if there's any time that you don't feel crappy, you can do whatever you want. You can walk all over the place whenever you like, you can eat whatever you like, visitor hours? That's for the wussy ICU - you can have them whenever you like! This whole "whatever" policy really worked out well for me, however the downside is that while you're in the hospital for things related to chemo, you don't feel like doing anything - you feel like complete crap. If you don't feel like crap, you're either sleeping or vomiting.

Wednesday, I pretty much slept and recovered from my ER trip. Mom stayed with me all day and Dave came over to visit. Stacy came back to see me around dinner time and Mom and Dave left. Early night - I was beat up pretty bad.

On Thursday I woke up and had a wonderful breakfast. My Brother came and visited me with his girlfriend, Leslie - she's had some health problems of her own going on, and she's doing very well now. It was great to visit with them for an hour or so. I was feeling a little better and wanted to talk to friends and family - I even organized a card game for after dinner that evening with a few of you. But I got very nauseous after dinner and had to have an injection to make me feel better, and that injection made very tired and spacy - so the card game had to be cancelled and it was very last minute notice - sorry again guys...

Friday I felt pretty good and I was in the routine. Stacy and I decided to have "Stacy and Bill's Big Hospital Day of Fun!". We went walking all over the hospital. We explored the gift shop which had what every sick person needs, a new faux-antique console table! WTF? They did not have an "I survived Piedmont ER" ring t-shirt, for which I would have easily paid 20 bucks. We found the basement cafe where Stacy got a Starbucks and I got nauseuated from the numerous smells from everything. We made our way throught the operations and maintence bowels and walked all over the hospital and ended up at the library where I found some much needed internet access. After checking a few email accounts and making sure banking stuff was doing OK, we retreated to the room - enough exercise was enough. Drew and Debs came over and visited for a while - good to see friendly faces at that point, I was ready to go feel normal again. Stacy stayed late with me in the hospital - I was pretty down - she held me in my bed until I fell asleep - I gotta tell you, it was some much-needed snuggling.

Saturday morning came and went - we were just waiting for my Doc to come in and sign the discharge order. The Nurses continued to try to give me more of my scheduled IV antibiotics, but I wouldn't have it - I wanted to get out. Finally around 1:30, I was discharged and Stacy and I came home. I had to lay down almost immediately - weak from the car ride if you can believe it.

It had been 4 nights and a bunch of pain since I had been home. Meow meow greeted me with many saved-up purrs.

Sunday, April 03, 2005

The ER - Part Deux

On the Evening of Monday, March 28th, I ran the highest temperature of my adult life - 104. I was feeling strange all day, and had a hard time getting out of bed for my chemo appointment at the crack of 2:30. I made myself breakfast around 1pm after watching "Indiana Jones and the Temple of Doom". I was feeling especially weak and tired, but felt that I needed to eat. I heated up some leftover ham and biscuits from Easter dinner and took a few bites while sitting on the kitchen counter. Boom - my tummy rumbled and my head got light - I was going to be sick. Rushing to the bathroom, I abandoned the remainder of my breakfast guessing that meow meow would finish it for me. Once I got the hurl-safe toilet zone, I sat down on my hurl-throne and felt a little better for a second, then a lot worse. Instead of being sick, I was having an anxiety attack, McDaniel style.

I'm coming to understand that what I keep calling an anxiety attack is a little worse than what most people call an anxiety attack. My blood-pressure dropped - I only know this from having one in the doctors office and being privied to the monitor. My pulse rises to around the 130's. I'm gasping for breath, probably hyperventilating. My temperature rises, and I sweat profusely - and I mean really sweat from every pore in my head and chest. Once damp, I start shivering, and then my vision gets patchy - like half the pixels on the TV all of a sudden turn black in a random succession. My hearing gets very sensitive and it also echoes. I have to lay down. I had the sink on full blast and was splashing my head and chest with water trying to cool down and regain control of my breathing. I doused the hand towel and draped it over my head. I had thrown my bathrobe onto the floor between the bathroom and the foyer, and then I fell/lowered myself onto my robe and laid there, focusing only on staying awake and breathing deep and steady breaths. I asked God to help me keep from passing out. I eventually decided that I needed to either call the paramedics, as I was home alone, or make it upstairs to lay in bed with my precious gatorade. Gatorade being a wonder-elixer. It made sense at the time. I had the good sense to unlock and crack the front door - just in case I needed someone to come in and help me. Then I pulled myself up, grabbed my robe, and crawled on all fours up the stairs - ran into the office, grabbed the phone and the gatorade at my desk, turned around and darted into the bedroom. My vision went out and I was very very dizzy - really about to crack my skull open - but I felt my way to the bed and fell into it! In hindsight, it was very dangerous, but I made it without injury this time. I was freezing and curled up in my bathrobe and blanket, still with the cold wet towel over my head and face. Stacy called just then and I told her what was going on - she rushed home to help.

Stacy managed to motivate me to show up for my chemo appointment that afternoon, even though we were an hour late - you just don't feel like getting back in the ring after getting knocked out. I went and they took my blood counts - very very low - my white count was effectively zero - that's really bad. Normal white blood cell counts are between 4,000 and 10,000. I got my bleomycin injection and they sent me packing. I was craving chicken fingers for dinner, so we stopped at publix and got some - it had gotten very cold and windy since we had gone out and I wasn't dressed right - I had a light sweater and light jacket and needed my peacoat for this kind of cold - didn't think much of it, since we were just ducking in to the store and back out. On the way back to the car I started shivering though - not normal for me - I shook it off and we got back home and ate.

But I kept shivering and it became more involuntary and pronounced. I couldn't stop and had to lay down on the couch. I was freezing cold, even though it was warm in the house and I had plenty of clothes on. We decided to move to the bed. Off with my over-clothes and into bed with all the blankets on top of me, I was still shaking like a leaf. Stacy held me trying to warm me up but it was no use. My temp was at 102 at that point, and it was only going to get worse.

Stacy called a few Mothers, mine included, to ask about high temperatures. It's gotta be hard to see a kid go through one, but it's normal for an occational high temp to happen. What none of us thought about was that I don't have any white blood cells, which means no primary immune defense system, which means fever=possible infection=possible death. I honestly don't know why we didn't go to the ER Monday night - we should have - but none of us thought about it. I maxed out at 104 and held it there for a good hour or so, then started cooling back down. I was popping ibuprofin and acedemedaphin at 2 hour intervals, downing pints of gatorade and water like crazy. I was shaking or convulsing or whatever for at least 4 hours. Stacy kept telling me it would be OK while rocking me back and forth. I remember repeating her words outloud and I remember her sobbing.

I woke up Tuesday weak, tired, nauseous, feeling about as bad as a man can feel - but my temp was down to 100. I had a hard time eating, but I forced down an omelet knowing that my body needed fuel. I stayed in bed for most of the day, sleeping here and there. Around dinner time, my fever spiked again and by 10pm and 102 degrees, we were on our way to Piedmont ER.

It was hell getting out of bed - I didn't want to go. What could the ER do for me? My temp had to come down on it's own, and the fever reducer meds were the same as I was already taking. The risk of contracting something at the ER was much higher than in my bedroom, and with my weak immune system, that was really the primary concern. Still, another night of 104 temps wasn't an option for us - so that sealed the deal. Once there, they immediately put a surgical mask on me and isolated us from the general ER crowd. They put us in a very small room called the "family council room" - it had a desk and chair, loveseat, and two other arm chairs, but the room was about 10 by 5 feet - quite cramped. The love seat wasn't long enough to lay on, but I tried with an assist from one of the chairs for my feet. Stacy made due with the remaining two chairs. Piedmont ER was swamped - they were triaging people in the halls outside our door. One woman was screaming bloody murder at the top of her lungs "take me now, lawd!". She complained of lung pain and was demanding pain meds. What I can't figure out is how she was able to scream so much if her lungs were hurting her. We were in the family conference cell for 3 hours with no interaction from the staff - fever still going strong.

Finally, someone came and apologized and took me into a room. She explained that they couldn't put me in with anyone else because of my cell counts, they had to keep me isolated. I was put into the ER's Operating Room. It's a larger than normal ER room with all the OR equipment including x-ray stuff and a huge supply store for the ER - big cabinents with everything the ER needs in them. This presented a problem, because every 20 minutes or so, someone would come crashing in on us grabbing something or testing some equipment - it was bad. I didn't see a doctor until 5am. They took tons of blood from me for cultures and count tests. On Wednesday early morning, my WBC was at 60. Remember that 4,000 is low.

Stacy left the ER OR at 7, exhausted, she had been trying to sleep folded up between two chairs. She had class that morning and I made her promise me that she would skip it and sleep - she had been up for 24 hours now and driving was a very bad idea. I would later find out that she slept for a few hours, then went to class anyway. The Girl has dedication. While she was gone, I dozed back to sleep and was woken up by a nurse who explained that she was sorry, but she had to test the crash cart which was set up behind my bed. I asked " on me?! " and instead of the a-material chuckle I should have gotten, she said "no.". Moving right along... The next time I woke up it was to my Mother's face! What a great surprise - and she brought me a chick-fil-a biscuit and some fruit punch! I was starving and nauseous, so I had to eat like a little bird, and I only finished half of the biscuit but the fruit punch saved me. Boy that was some good fruit punch. The doctor admitted me to the hospital some time around 8am, but there was a wait for beds - and I had to be on the oncology ward because of my need for a more sterile environment - so it was around 1pm on Wednesday when I finally got a room and a bed - about 15 hours after getting to the ER.

Wednesday, March 23, 2005

so nauseous...

Sorry for the delay in updates. I had a few days of good health to enjoy the wonderful engagement party at my parent's house. Many of you were there, and Stacy's Dad and Sister flew in to celebrate with us. It was a great weekend. This week I've gone downhill.

I'm half-way through my second "hard week" where I go full time to the chair. I spent Monday afternoon in bed and in the bathroom, hitting a record-breaking 3 vomit sessions in one hour, and one more in the following half-hour - bringing me dangerously close to dehydration.

Stacy had an honors society-type banquet Monday night that I really really wanted to go to - she's worked so hard this year to maintain her position at top of her class - it was a pretty big honor, and I couldn't make it out of bed much less into a car. I made her go, and Dave, Ed, and Rob came by to keep me company - oh, and to rush me to the ER if I lost any more fluids. Slowly, the gatorade and "Smith's Famous" BBQ pork brought me back to health - or at least close enough to take my anti-nausea meds orally again... Eww...

Tuesday was better - I got some extra IV hyderation while in the chair - that seemed to help. Stacy and I even went out to lunch after chemo and I was even able to drive! More so that I'd be in control of the motion - that seems to help dull down the urge to spew. I kept up a pretty level tummy all afternoon, but I was very tired from all the meds ; Stacy and I had some dinner and watched 24 on the dvr and hit the sheets before 10.

Today, Wednesday, I woke up with some tummy trouble again. No protein shake this morning. Mom came down to take me to chemo - which was good - I think it helped her to see what the whole setup was like ; not to mention how great everyone is at the office. I got my weight back up to 165.5, meaning I've only lost 3.5 pounds so far since the start of chemo almost a month ago. Thems' braggin' rights, I don't mind telling you. After some IV meds to calm the old tummy, I ate one and a half sandwiches from the hospital cafeteria ( thanks Ma! ). Shameless, I hit the sheets with a full belly and left my poor Mother to stacks of boring magazines all morning. After a stop by Stacy's pharmacy to pay all of my outstanding perscription bills and purchase even more nauseua drugs, Mom brought me home and we had a late afternoon lunch - she cleaned up the house while I rested and felt guilty, as a son should. Stacys out for a well deserved night with the girls - the house looks great thanks to Mom - and I'm gonna clean myself up and get some rest. Tummy is at vomit-con 3, threat-level stable. For now...

Friday, March 18, 2005

The Blue Light Morphine Special

What would you pay for a shot of Morphine, the wonder drug? The super-pain killer that makes the hurt go away in an instant? The miracle worker which can turn that frown upside-down?

Would you pay $300? How about $150? What about $75?

Let me tell you that when you need it, you'd pay however much someone told you that it cost. I don't care if you didn't know where your next meal was coming from - you'd pay it and you'd be happy.

I just got the ER bill from last week, and the Morphine was only $22 per injection - I got 2 and it helped me relax enough to regain control of my breathing. Well, the Morphine and the Toradol ( anti-inflamatory, $18 ), bringing my total pharmacy bill to $62. I'm seeing a ton of high-priced meds cross my desk lately, and let me tell you that this is a bargin. I'm guessing it has something to do with the broad-scope ability of Morphine and it's mass production.

While we're on the topic of costs, I'll share a few numbers. Every chemo program is different, but mine costs between $1200 and $2000 per visit. My Surgery cost around $10K. CT ( or CAT ) scan or your chest costs around $2500. Chest X-Ray costs just under $300. EKG costs $200. The blood tests that you need every week cost around $100.

So all told, my Chemo program over 3 months will cost around $45K. Plus the costs of any perscription meds for nauseua and anxiety and whatever else comes up in the mix.

Keep in mind that my cancer is one of the most un-complicated cancers to treat, and also that there's a chance I'll have to have more than just the 3 month treatment, so this number can only grow.

My insane COBRA premiums are $350 per month, so JUST for the chemo ( forget the ER, the surgery, the dozens of other doctors I've seen for related stuff ) - Just the chemo, I'd have to pay insane COBRA premiums for almost 11 years in order for the insurance company to break even.

Thank goodness they kick you out after 18 months.

Any guesses why it's taking so long to process my COBRA application? ;)

Tuesday, March 15, 2005

Hair is for Babies!

After a scalp-itch this morning at my desk, I scratched my head and came back with a fistfull of hair - two weeks on the DOT! Too bad the pool hadn't been established yet - let this be a lesson to all of us - never wait to follow through on a betting game...

From the front...

From the side...

And one just for fun...

About the ER Trip...

I've gotten a lot of questions about what led up to my emergency room visit this past week, so I thought I'd elaborate a little.

The best guess for my condition was made by the ER doc - some sort of extended hyperventilation. Evidentially, you can hyperventilate for long periods of time, even subconsciously in your sleep, and effectively create inflammation in your chest to the point where it's very hard to breathe.

Some of my other doctors and nurses disagree with this idea, but nobody can give me a better explanation.

This extended stress response lasted for about 4 days leading up to my ER visit, and a whole bunch of other stress-related responses occurred during these 4 days too. I had horrible night-sweats one night - to the point where I thought i was having a nightmare - I was so soaked with sweat that when i dabbed my head with TP, it fell apart in my hand. I also broke out in pimples all over my head, chest, and back - initially I thought these were hives, then pimples from the night sweat episode, but I'm pretty sure they are a seperate response, since they aren't on my legs or arms. They are going away slowly, but they are still all over me. The worst stress response was that I felt absolutely out of body - as in I had extreme sensory perception problems.

I've told a few of you about this, but one day I actually had to turn around in the shower to make sure that it was still on - I couldn't feel the water. My hearing had an echo to it, and it was hypersensitive. I've since lost the echo, but my sense of smell and hearing have improved dramatically since I started chemo. Some of you have suggested that the smell is due to me quitting smoking, however I've quit smoking dozens of times and this increase in my ability to smell is definitely greater than normal. I was incredibly tired all the time - so much so, that I couldn't move around the house for more than a few hours before I had to lay back down and rest. At the time, I thought this was the normal fatigue related to the chemo, and I was very very scared about feeling this way for 3 months - in fact, I doubted that I would be able to do it - even as dedicated to this as I am.

This sensory perception problem was more likely an anxiety response than a drug side-effect. After treatment at the ER, all of that disappeared and I feel GREAT now, as many of you witnessed this weekend. I'm very thankful that it's over - it was the worst I've ever felt in my life - just a very sick and defeated feeling that sucked all my physical and mental energy away. I'm excited to get into my next big full-time week of infusions ( next week ) so that we can see how I feel afterwards - since I had all these problems, I'm not quite sure how bad the fatigue really is. At any rate, I'm lucky that I went to the ER and that they were able to fix me up - the longer I waited the more damaging the effects would have been.

I have no long term problems caused by whatever happened to me. I've been to a cardiologist and my ticker is in fine shape. They took a good look at my lungs and chest and I don't have any fluids or blood clots anywhere in there. In fact, I'm in pretty good form after all - and feeling pretty darn lucky about it too.

Monday, March 14, 2005

Weekend O' Rama!

Man, it was great to see a bunch of you this weekend! For those that don't know, I was feeling great and had an event-packed weekend.

Uncle Dan and Cynthia came down from the freezing block of ice called Chicago to visit with us, so we had company at all times - most of you know how much I enjoy that family time. On Friday, Stacy and I went to the 10 year party at the Cooks Warehouse, the local kitchen supply store - we didn't win any door prizes, but we had our share of great appetizer and free wine.

Saturday, we had a brunch to celebrate Brent's birthday over here - so the whole family came over for most of the afternoon. Brent had to go to work, but Megan and Ronja stayed with us and explored L5P all afternoon. We had dinner at the Patio - delicious as always, and I had missed going up there! I saw a bunch of you guys at Ed's party Saturday night and that was great, we left at a respectable midnight. On

Sunday, the house of the waffles called us and we answered - nothing like taking someone on their first visit - I think Cynthia's heart is still recovering. Then we went to Piedmont Park to enjoy the most beautiful day ever - aside from minor injuries, we had a great time. Stacy's finger is looking much better after a football catching mishap. Also, Dot Com taught my fiance to chuck a spiral much better than I can... As if I wasn't having problems with my masculinity already...

Dan and Cynthia left before dinner, and Stacy and I ended the day by scooting over to the new Target off of Moreland at the old Atlanta Gas Light complex. It's about 2 miles from our front door so it's super nice to have that place so close. We went to the grocery too and made some roast chickens for dinner - perfect end to a perfect weekend!

Wednesday, March 09, 2005

S.O.B. (shortness of breath)

Appologies for the delay - it's been quite a weekend.

On Saturday, I started to have mild chest pains and shortness of breath. Being a rational and logical person, I ignored these so-called "warning signs" as coincidental and meaningless. By Sunday afternoon, however, I was sure that my body was trying to tell me something besides... well besides nothing, and I called my Oncologist to ask his opinion. The most logical explaination was an upper GI disruption caused by one of the 27 anti-nauseua meds I've had in the past week - IE, take some over the counter heartburn tabs and some anti-anxiety head meds and go to sleep. This worked for me Sunday night - I slept very well.

On Monday, Stacy took me in for my "easy" chemo day - every Monday on my 2 off-weeks I get a short infusion of Bleomycin only - should take under an hour to administer. I was feeling very tired and fatigued when I got there, much like a chemo patient should, and my chest was feeling very heavy once again. They took some blood and checked my counts - good news: my counts are as high as they were before I started chemo - that's really great because it means my immune system is still very strong. With my breathing complaints, they decided to draw more blood to test for a few other things.

So as I sit in the infusing chair I have one IV in my right arm for the chemo which is being used to draw blood, and a second IV in my left arm to draw some more blood - Stacy is sitting in a chair in front or me and there are Nurses on either side of me and people are talking and all of a sudden everything get's loud and hot and BOOM! I'm lightheaded and seeing spots, my blood pressure drops through the floor, my pulse shoots for the sky and every ounce of water in my body comes out through the pores in my forehead. I'm going down! I manage to gasp something like "dizzy!" to Nurse Stephanie, and that was all she needed to hear. Her training took over like an instinct - and her reactions were so fluid, they seemed involuntary. Before I knew that I had cried "dizzy!", my feet were up and I was resting on my back, I had a blood-pressure monitor on my arm, a pulse and oxygen monitor on my finger, and even a cold and damp washcloth on my brow to make me a little more comfortable. Later I learned that she had also armed herself with amonia package, the likes of which can wake a Man from the darkest of woozy-induced faint spells, but it was not needed this time. Once my pulse rested and my vision returned, I saw Stacy sitting calmly by my side with her hand on my elevated foot comforting me as the saline rehydrated my shocked system. She knew exactly what had happened and exactly what I needed from her then. After I had drained the equivelant of a wine bottle of saline, I had my Bleomycin infusion, thanked Nurse Stephanie, and headed home to rest.

But Monday night, rest would be little. Funny how something can sound so good one minute and repulse you the next - my red wine met it's fate in the already overcrowded Atlanta sewer system. The "Buchter Lasagna" enjoyed the grace of my stomach. My chest was still weighted and my breathing was increasingly labored. I took meds that counteract the nauseua, and some extra anti-anxiety meds too - just to make sure I slept well during my discomfort. The drugs worked, and I slept - but not as well as I had hoped.

Tuesday - I was in pain. My lung capacity was around 60% of what it normally is. Nurse Stephanie worked with me all day to find a resolution. We ordered a chest x-ray to check for fluids, but found nothing. A chest exam showed no sign of problems again. Toward the end of the day, with the pressure in my chest increasing still, Nurse Stephanie recommended that we go to the ER.

Truthfully, we would have been there anyway in the next few hours - like it or not.

I wanted to eat before making the hike in to the ER ; knowing that it would be a long time before we would get out. I was in pain, but still hungry, and Lisa's Turkey Meatloaf Cordon Blue with Garlic Mashed Potatos was the comfort food that God would eat if he had to go to the ER. In fact, that dinner came close to fixing me right up, but we went on to the ER just to be sure.

Mom had kept up to date with the situation all day, and couldn't stay away any longer. She drove me and Stacy to the ER and settled in for the wait - I was glad to have her there. Amazingly, if you tell the charge nurses that you're having trouble breathing, you get to go ahead of other people with less life-threatening injuries - EVEN THOUGH they were there before you! The drugged up rave crowd didn't look amused, but I winked at them on the way back anyway, just to rile them up a little.

I pulled myself into a wheelchair in the ER - it helped at that point to have some lumbar support. The wheelchair was all metal frame grid - like a shopping cart - with no cushions - and it was on casters, not wheels, so you couldn't push yourself around, someone else had to do it for you. The nurses told me that this was because people would steal wheelchairs out of the ER! I only cared about the utility, and after a few minutes I explained to the nurses that I felt a little better from the support the rigid chair had brought. They exploded into laughter, saying that was the first positive thing they had ever heard about the uncomfortable metal chairs.

After a few admissions questions and signing over my first born to some company called evil-med-co, inc. , we were brought to a quite pleasent and private ER bay with a bed, a TV, and a few chairs for Mom and Stacy. There was even a dimmer on the lights - my bedroom doesn't even have that. With the help of a few Doctors, Nurses, and Technicians, I eventually went through yet another chest CT scan ( aka CAT Scan, evidentally CAT was one letter too long of an acronym ), and EKG, a few chest exams, and, yes, more blood tests - all of which showed negative for any fluid in any bad places, any blood clots, or any abnormality at all. In fact I might have the most normal looking chest, lungs, and heart that anyone has ever seen in that ER - and they would know - they looked at everything!

The remedy came in the form of IV drugs - one for inflammation, and one for pain. The one for pain was called Morphine - and I must admit, it did it's job and nothing else. After the initial twinge of the injection - it shocked my system for some reason - I was almost immediately pain-free and able to breathe at about 90% again. The Doc warned against feeling spacy, but I didn't feel anything but relief. We made it home around 1 AM and I fell asleep breathing deeply and soundly.

The cause of all this is still unknown, although it's suspected by the keen ER Doc's that I somehow hyperventilated / hyperextended my lungs by involuntarily gasping for air, maybe even in my sleep, most likely a stressed anxiety response due to my chemo treatment! I think that's an amazing theory, but in all honesty I don't have a better one. All I know is that they helped me to be able to breath much easier again, and for that I'm very, very grateful. It sucks to not be able to breathe - so do me a favor and take a good long deep breath right now after reading this. I know it's silly, but just enjoy it and appreciate it for a second - it's a good feeling...

Friday, March 04, 2005

MILESTONE - End of hardcore week #1

It's Friday - and I made it through my first hard core week ( that's one of four weeks of full-time in-the-chair chemo ). I'm still hooked up to the pump at this point and I feel tired but proud. This morning, like yesterday, I was 30 minutes late getting in to the chemo bay ; just something about getting your butt kicked doesn't make you want to rush to be on time. I have so many drugs at this point that my coffee tastes like asprin - or maybe they put asprin in the coffee here - who knows.

A few Friday Pictures for all of you out there:

BACKGROUND: Some of you have asked about the setup here. I'm in a recliner chair with a mobile IV pump next to me on casters. There's a pump tube stuck into the IV in my arm. The IV is changed every 2 or 3 days, so I keep it in overnight most of the week. The actual drugs are in bags attached to the poles on top of the pump stand, and the nurses change out my bags when they are empty. I'm getting dosed up at about 600ml / hour - so about 2.4 liters go into my body in a 4 hour session.

Here's what I look like this morning - I blame the doofy look on my crappy cell phone camera...

My drugs - they say the one bag is in brown paper because it's light-sensative, but I know it's to make me feel like it's booze...

The pump - it makes a hum noise that you get real used to, and also beeps when it faults.

My IV - recent studies show that the devil horn fingers make the drugs work better.

Thursday, March 03, 2005

Rob Makes Blog Headlines...

Rob, showing support with a stylish metrosexual armband.

ATLANTA Rob, in an attempt to make blog headlines this evening, stopped by with well-wishes from himself and Catherine - seriously guys, thanks so much. So far the best things about Cancer have been the showering of presents and food, both dropped-off and eaten-out. Ed and I found ourselves pondering life over a delicious steak salad at Neighbors today for lunch - and even though we looked like facist skinheads, everything was ok... because it was warm enough to take the top down on the benz. I got to see Debs after chemo today too, so pretty full day here for Bill. Stacy and I are going to try to take a short walk and get out of the house and mabye go out to dinner - i think the long term anti-nausea meds are working great at this point. Plus when Stacy comes home I feel a little better anyway. More later - thanks everyone for a much better day than yesterday!

Balancing out...

I'm feeling a little better now that I've had a chance to balance out with the side effects. I took some anti-anxiety meds to sleep last night and slept from 10 to 8 ; I was late coming into chemo. Nurse Stephanie said she was worried because I've been so punctual this week, but she know's that I really didn't want to come see her today. It tough to go back to a place you know will make you hurt more, even though you know the hurt is just part of the deal.

I slept in the chair this morning until about 10am. If you had told me that I'd be able to sleep with a needle in my arm yesterday, I wouldn't have believed you - but you deffinately get to a point of exhaustion where even the most squeamish are able to ignore the 600ml/hour fluid pump screaming through your veins.

Meanwhile, I'm trying to get my contract with Navara on paper - we have a project kickoff this afternoon with an account that has the potential for a long-term relationship with a guy like me. I feel crazy for even exploring the idea of working, but I've been very honest about my situation and they seem to be cool with it. It's nuts that I actually have more work to do now that I'm in Chemo - or at least more oppertunity; don't worry, this therapy is my number one job - money gig's are secondary.

Then just when I was feeling drained again this morning, a few people messaged me. Uncle Dan checked in and offered up some encouraging words even though he's feeling sick - feel better buddy!

Dave has been sick too, but he seems to be doing better. I haven't been able to see him, even though he lives in the next building, because my immune system is so defficient that I'm afraid to be around anything - it could land me in the hospital. He also sent me this LINK about Greenspan checking out the national sales tax!!! YAAAAY!!! Read it, love it - thanks Dave!

I can't get over it - Brad's idea is being discussed by Greenspan...

Wednesday, March 02, 2005

The Side Effects Kick In...

Around noon today I started feeling tired. Not just tired, but 3am-what-am-i-doing-awake tired. I'm really really tired, and sleep doesn't seem to help. I'm also hungry, but everything makes me nauseous. I was supposed to go for a walk with dot-com, but had to cancel. I was looking forward to stopping by Ed's new house construction site to watch the concrete pour, but couldn't make it. I napped most of the afternoon, and I'm still yawning.

Rob was over yesterday with his video camera ; we were trying to capture some thoughts on film. I felt great then ; and now less than 24 hours later I feel horrible. I took some of the anti-nausea meds and stuffed some food down, but I still feel very weak and empty. Hopefully this is temporary and I'll feel better after a good nights sleep.

On the bright side, they took out my IV today, after 3 days of having a tube in my arm, so I get to sleep without restrictions and I get to shower without plastic wrap around my arm. I scheduled surgery to have a port put in my chest so that I don't have to have IV's hanging out of my arm all the time, but in hindsight I'm not sure what's worse - having a lot of IV's or having surgery to put this thing in and then another surgery to take it out... Sounds like a lot of surgery. Nurse Stephanie ( read: saint ) said that my veins are good and i'll hold up well ; so I'm actually leaning toward not putting myself through another surgical procedure... Need to sleep on that one.

I also got my video sender device in the mail today - it's a little black box that let's me watch the DVR from bed - so when I have to lay around I'll at least be entertained.

Meow Meow know's something's up. She took a nap next to me today to keep me company.
We'll see what the morning brings.

Hooked to the pump...

Week One

Week One - 28FEB05 to 04MAR05

Skip over the parts that might bore you – this is a comprehensive update.

NOTE: I’m doing my best to explain crazy med terms through this document – use this as an aid if you need to : .


At this point, I am diagnosed with type 2, mixed germ cell and embryonal testicular cancer. I have been through surgery and am now in a primary chemotherapy program. My scans and blood enzyme levels show lymph node involvement and blood vessel involvement, meaning that the cancer is spreading through my body via these two paths. At this time we are not aware of any other existing tumors.

I’ve had ultrasounds and cat scans and every fluid you can imagine drawn from my body. I’ll have to repeat these tests and scans and samples for the rest of my life, although as time goes on with good results, I will be able to do them less frequently. You can read a little more about the long-term checks @ .

Every man reading this should do a self exam the next time you get undressed. Find out how to do one @

Every woman reading this should remind the important men in their lives to do the above.

If you find something, talk to your primary care physician if you must, but INSIST on an ultrasound no matter what – preferably from a Urologist ( that’s a reproductive-type doc ). An ultrasound will show very quickly and very clearly what a lump or abnormality is. Primary care physicians typically do not have the expertise to identify abnormalities of this kind, but a Urologist can spot it in 3 seconds.

I went to Dr. Bruce Stein of Atlanta Urology Associates at Crawford Long – and he actually did the surgery on me too. The procedure is called a complex left Orchiectomy – you can read more about it @ . In just over 2 weeks I am almost fully recovered, even able to run and ride a bike just like a real boy.


I’m currently in day 3 of chemo – the drugs should start to make me feel like complete ass by day 4, maybe 5. Here’s a list of the crazy drugs I’m on, along with some links to describe them:

Crazy Drug Name: Bleomycin, AKA Blenoxane
What it Does: Interferes with cancer cell growth
Why it's Scary: Also interferes with regular good cell growth. Super nasty side effects including pulmonary fibrosis, which can be prevented if caught early. Scars lung tissue for life – no more scuba diving or any compressed gasses. Stays in your system for 2+ years. Probrably will make you sterile, even if it doesn’t no kids for at least 2 years until it’s out of my system.

Crazy Drug Name: Cisplatin, AKA Platinol
What it Does: Interferes with cancer cell growth
Why it's Scary: Also interferes with regular good cell growth. Rarely causes color blindness ( which I already have ) and deafness which can be prevented if caught early. Also causes nasty digestive problems which can be remedied with other drugs. Oh yeah, and it is actually platinum, just like Stacy’s engagement ring.

Crazy Drug Name: Etoposide, AKA VP-16
What it Does: Interferes with cancer cell growth
Why it's Scary: They don’t know how it works, but it seems to work so evidentially that’s good enough for the FDA. Hair loss and general hardcore drug side effects apply.

I’m on some IV premeds also to help my body react to the shock of controlled toxic poisoning – aka, chemotherapy.

Aloxi, Anti-nausia
K20, Electrolytes
Mannitol, Hydration

In addition, I’m also on ( or have been on ) the following prescription drugs

Vicoden (not taking) , Surgery Pain

Levoquin (not taking) , Broad Antibiotic

Emend , Anti-nausia

Ativan , Anti-anxiety

Shaved Head

I’ve shaved my head a few times now at different lengths in preparation for hair loss. I figured I’d take the hair before the chemo did. I have to admit that I freaking love not having hair. I save time in the shower, I can wear hats, I can even sleep whenever I like and I KNOW that my hair looks the same.

On 01MAR, Ed Strennen shaved his head in a show of support. I actually think it was a mixed show of support and a hatred of paying for haircuts ( like me ), but either way – he looks 10… days younger. I might be biased, but I think it looks great, and think of all the time Ed will save by not having hair! It’s a win-win.