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...

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? ;)

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.

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!

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...

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.

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...

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 : http://tcrc.acor.org/dictionary.html .

Cancer

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 @ http://www.tc-cancer.com/atreatment.html .

Every man reading this should do a self exam the next time you get undressed. Find out how to do one @ http://www.tc-cancer.com/selfexam.html.

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 @ http://www.tc-cancer.com/orch.html . In just over 2 weeks I am almost fully recovered, even able to run and ride a bike just like a real boy.


Chemo

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.
Reference: http://www.nlm.nih.gov/medlineplus/druginfo/uspdi/202093.html

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.
Reference: http://www.nlm.nih.gov/medlineplus/druginfo/uspdi/202143.html

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.
Reference: http://www.nlm.nih.gov/medlineplus/druginfo/uspdi/202234.html


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.

Head Shots!

Current Head Shot - Still has the hair...


Previous Head Shots - loosing the hair...
This next one was Stacy's idea - I had no say in it...