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!

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.

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.

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.

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...

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.

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

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.

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.

THE BEST DAY OF MY LIFE

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:

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

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

Dinner
Salt Pepper Sugar Kit
Jello Salad with Fruit
Iced Tea
Ice Cream
Margarine
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.

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.