Port removed today

Well,

The final stage of my ordeal is complete. The port was removed today in a quick surgery. Thanks to all my friends for your support. For other who read this blog in your quest to get more information about Hodgkins, I regret not posting more often. Honestly, ABVD treatments became rather routine (albeit still unsettling for 4-5 days immediately following). So far, I am fortunate that I responded well to the treatments. If I do happen to relapse, I'll be making every effort to get involved in the SGN-35 trials with Seattle Genomics. If you are in a trial due to a relapse, please post a link to you bog or experiences as a comment to this (hopefully last) entry.

Final PET/CT Results

As of August 10, 2009 my PET/CT states that I continue to be in remission. Good news!

Last Chemo today

Well, the final day has arrived. I receive my final chemo treatment. Thanks to everyone for your caring and support. With any luck I'll remain free of cancer for the rest of my life.

Only 2 more treatments

All,

I have just 2 more treatments. Some of you know that Karen and I, along with the kids, will be going to Hopetown, Elbow Cay, Abaco in the Bahamas for the next year beginning in September 2009. I'll be writing about it at http://www.boatchannel.tv/blog Thanks for all the kind words and support. We plan to be back in a year but who knows where this adventure will lead us...

Remission

Based upon my PET scan last Wednesday, it appears that I am responding properly to the chemo. They can find no trace of the cancer so now we just follow the original plan until July 9. If everything is still clear after that, it's time to celebrate!

Chemo 6 yesterday

Halfway through folks. Same drill.

What If...

Karen and I were talking last night about relapse. Obviously, I'm not even through treatment yet, so it's ridiculously premature to discuss, but you can't stop the mind from wandering through this territory. Hodgkins relapses, while rare, are pretty nasty from what I have seen. They typically involve stem cell therapy and can even relapse after that. I started asking myself whether I'd like 1 year of quality life or 2 years of treatments with no guarantee of survival. It's a logical thought in my mind. Treatment gives you no guarantee of a future. It's a bet on the future, whereas, living your life is pretty much a guarantee. Sell it all and enjoy! It's a bittersweet thought to be sure, but there is very little sweet about the idea of stem cell therapy.

Karen ran across an interesting clinical trial that has just received the fasttrack from the FDA. It seems to be targeted at people who relapsed after chemo and who either participated in or choose to refuse stem cell therapy.

BOTHELL, Wash.--(BUSINESS WIRE)--Mar. 30, 2009-- Seattle Genetics, Inc. (Nasdaq:SGEN) today announced that the U.S. Food and Drug Administration (FDA) has granted fast track designation to SGN-35 for the treatment of Hodgkin lymphoma. SGN-35, an antibody-drug conjugate (ADC), is in an ongoing pivotal trial under a Special Protocol Assessment (SPA) from the FDA for relapsed or refractory Hodgkin lymphoma.

This guy has been undergoing treatments after 2 relapses. I do not know what his outcome is, but he seems to be in pretty good spirits and the side effects based upon his comments appear to be minimal.

April 2, Chemo 5

Just realized that I failed to post when I had my last chemo. Ditto from last time. Settling into the rhythm of chemo. Still planning beach location getaways in my brain to keep me sane.

No news is good news

Just the same old feelings for the past few days. Moderate nausea and everything tastes like crap. Karen and I added up the treatments and it looks as if my last treatment will be on July 9. We are trying to figure out how to celebrate assuming everything is eradicated. We'll probably do a big bash at our home followed by a trip to the islands. 8 more treatments hopefully without radiation at the end. Hoping to get a PET scan next week before my next round.

Chemo Round 4

Sitting in the chair now. White counts were at 5,500 today. Weee. I should be here until around 2:30 today. Just read a really interesting breakthrough regarding Hodgkins and Reed Sternberg cells. I think I get it but may need Cheryl to read the original journal and translate!

Hodgkins Breakthrough

And we can thank Cheryl for the layman's explanation. Thanks!

Hey,

Just saw the comment on your blog, so I had to find the article b/c I'd rather be doing this than my real job right now:

http://www.nature.com/leu/journal/v23/n3/abs/leu2008314a.html

I have to go to the library to get the full text...I can do that if you are interested.

I think I can translate without the full article.

This article describes processes that are failing when a cell divides. Telomeres are the ends of DNA that are like the plastic tips at the end of the rope or shoelaces - basically, they protect the ends. Picture DNA as a strand of rope. When a cell divides, the rope has to be duplicated and the resulting duplicate will become part of the new cell. There are 'building structures' that pull the duplicate away from the original strand (this is the spindle). Just imagine, that if you threw a bunch of tangled ropes on the ground, there is a way to systematically pull the ropes apart in an organized fashion when everything works properly. This article is basically saying two things: 1) the mechanism to pull the ropes (DNA) apart systematically fails, so there is a jumbled mess and 2) the protective ends of the ropes are no longer there to protect. (This is really very oversimplified). Bottom line, the ability of the cell to divide and pass the genetic code properly is damaged. Knowing this gives researchers a clue as to what they might be able to target to develop a therapy.

BTW, the pics of you and your bald friends are nice - you've got a great group of friends!

Back to my real job,
Cheryl

Karen is looking at brownie recipes....mmmm brownies.

Head Shaving

Well, the hair was coming out at a rate of 5-6 strands per tug so I decided to shave it off. I had plenty of eager followers. Some of them didn't have much hair to begin with and others had full heads of hair. It was one of the funnier experiences I have had in my life. We had shavers buzzing as multiple people assisted. I think Tim wins the prize for most interesting style. At one point he looked like a Roman Senator. Tim decided to go completely Kojak on us as we shaved his head to a smooth dome. Very entertaining!

Thanks for making the process fun guys. What a great group.

Jeff's Pics
Tim's Pics

Hair

Well,

Looks like the hair is coming out at a pretty good clip (no pun intended). I'm going to schedule the head shaving party for this week sometime. I need to talk to Tim Moses since he has (stupidly) agreed to shave his head when I do. I'll set a date and time and if you have interest in being on either side of the clippers c'mon down! Maybe Tuesday afternoon, St. Patrick's day.

OK, which one of you sent me the T-shirt

I received a packaged with 2 T-shirts. They are apparently promotional materials for my Blog. Very funny. The other shirt says 'Tap the Rockies, I'm a Colorado Girl". It might be a sexual reference, but it's hard to be sure ;) I love all these random surprises from friends. It's like it's my birthday every day.

So most of what I'm going to post is just for the record so others know how I felt at this point. Mostly boring stuff. Sorry. My 3rd Chemo took a couple of extra days to wear off compared to the 2nd. It took a full 7 days for me to feel 'normal' again. I've also had this odd feeling in my gut, just below my ribcage. I can't tell if it's my tumors shrinking in size as they get attacked, or just intestinal issues, but it's there. It's not terrible pain, just noticeable.

The Neulasta shot helped me on two occasions where I could really tell. I had bone pain in the back of my pelvis and spine on two occasions after receiving the shot, separated by 3 days. My latest counts (Thursday) were over 12,000. Hey, and guess what the Neulasta shot costs....higher....higher.....$7,200. The way I see it, it's 1/4 the cost of a hospital stay if I go Neutropenic, so I'm saving the Insurance Company $21,000 per week. I am so frugal.

Karen just reminded me about my anemia. The chemo also causes low red counts. My reds are a bit low and are seriously affecting my energy level this week. I have slept quite a bit. Reds help transfer oxygen from your lungs to your cells. There are apparently shots (with side effects), to bump up red counts, but I'm not there yet. Hopefully I will not go there.

So, it's day 36 and I'm regularly pulling 3 - 4 strands of hair. I'm still not sure if this means I am going to thin or if I'll just lose it. If it changes significantly, the head shaving party is on! Don't be chicken. You know you've always wanted to see the dome. You just need an excuse. We could all shave our heads and then go out to eat at a restaurant together. They'd think we were some kind of cult. Your wife will glance over at you and not realize it's you. Spice it up man! Shave the dome.

It's good to have dated a Biochemist!

Thanks to Cheryl for translating this Neupogen jargon:

Jargon: Neupogen is a granulocyte colony-stimulating factor (G-CSF): Colony-stimulating factors are glycoproteins which act on hematopoietic cells by binding to specific cell surface receptors and stimulating proliferation, differentiation commitment, and some end-cell functional activation.

Translation: Neupogen is a protein that has sugars attached to it (that is what 'glyco' means...and for your purpose, really not useful information b/c what you are given does not have the sugars on it as E.coli cannot make proteins with these sugars hanging off them). The way it works is that it stimulates the cells in the bone marrow, hematopoietic cells, to produce more white blood cells (granulocytes). The way it stimulates the cells is that it goes through a 'cell signaling' process...think of this as a chain reaction.....The neupogen is floating around, it binds on the outside of the cell to a receptor (think of a key fitting into a lock). The receptor is changed in a way that it sends a signal to the interior of the cell and tells the cell's machinery to make white blood cells.

Sleepy Saturday

Slept the day away. It felt good. Nausea is minimal, but still have that dull hangover feeling so apparently Miso is not the cure-all, although I do think things have been better. I'm bored beyond belief. Karen's sister Kellie (sp?) is in town for the week so she gets to see just how dull our daily routine is!

I've seen a few wisps of hair fall out, but nothing major yet. It's possible I'll just thin a bit, but another week will probably tell the story. As usual, no news = good news. Todd, thanks for the practical words. I agree that we decide on the path of our life. Love the Hawking quote!

When I think of the sacrifice so many cancer victims have endured in the interest of furthering our knowledge to help future patients it instills a deep humility within me. Thank you medical research and technology. To think, 50 years ago, this would have killed me without a chance.

UPDATE: The Neulasta hurts in a different way from Neupogen. The pain radiates up my spine. Just took a Tylenol to ease the pain, but it came on pretty suddenly (over the past 15 minutes).

First Neulasta Shot

Well, I made it through Thursday night with no problems. I was fearful that my white counts were going to drop. They could have, but I won't know since I'm not slated for blood work today. Interestingly, I feel better today than I did after the previous round of Chemo. No hangover feeling at all. It's possible I could attribute this to a new client who has Crone's Disease. She is a very cool individual and is pretty knowledgeable about Macrobiotic Diets. She said that she drinks two bowls of Miso Soup every day. Well, I love Miso soup so this is no challenge for me. I drank some yesterday after Chemo and felt remarkably good this morning when I woke up. I had another bowl for breakfast. She even gave me the recipe which I will list below.

Just for some background, her name is Mee and she is a very unique person. She speaks Hebrew, Spanish and English all fluently. She is full of life and is a writer for sever publications. She also runs a blog called Princess Know It All.

So glad to hear this!!!! Hurray! Coincidence or not, good news!
OK first all products must be organic - he has enough chemicals in his
body anything extra is taxing for his system. If you can't find these
items organic no worries just get the miso in him! Yahoo!
Wakame- dried seaweed in the asian section of whole foods - small bag
- it's not organic, I don't think it's possible to get this organic.

Dried shitake mushrooms ask the guys in produce section. I buy a small
amount cause you only need a few per serving.(again if they don't have
organic just rinse them off good and do your best)

Small bottle of organic soy sauce also in asian section.

Miso - I like the white miso - MUST be organic. Miso is magical cause
it has live cultures in it that kill off bad stuff in the body.

If you like tofu, I buy firm organic- cut it into small cubes.

I like to use small green onions chopped up in my soup and cooked, you
can garnish with the green tops if you like too.
I also use just regular onions chopped small.
Daikon- it's a radish whitle- ask the guys again, if they don't have
it I did find it at Krogers last week. You need only one 'cause your
going to use a small amount. Daikon is really important cause it
cleans our blood! It cleans our liver and kidneys! Makes you feel
great!
It has a mild tast, actually I like raw slices of it now!

I also add grated carrots to mix it up a bit!

STEP ONE:
take a coffee cup add a pinch/ half teaspoon of dried Wakame Seaweed
- a little goes a long way. Fill coffee cup half way with cold water (
enough to soak the seaweed when it expands).

STEP TWO:
Do the same with the mushrooms in a separate cup.

STEP THREE:
Fill your sauce pot - you can make enough for 2 days. So you decide
how much water you want to use I do about 4 cups of water.

STEP FOUR:
Chop onions again amount you like for taste - big pot half onion,
small pot quarter onion. Add to water that is starting to heat up.

STEP FIVE:
Add chopped carrots and Daikon. Again I would chop a few inches of the
Diakon - I tend to put a bit more diakon then onion.

STEP SIX:
Once water is boiling and seaweed and mushrooms are hydrated add the
coffee cups with the water they are soaking in to the pot.

Cover and let cook adding a teaspoon of Soy sauce and your desired
amount of Tofu.

Once your soup and veggies are cooked ( they cook pretty quick) bring
the heat down BELOW a boil. Miso can not be BOILED it kills the
bacteria that helps the body.
Add your miso. You can not really reheat miso so if you are making it
for two days in a separate small pot, remove the soup that you are
going to eat and at a low temp. heat up once heated add a teaspoon of
miso per serving in the small pot. YOU don't want your soup to be TOO
salty.

Eat right away! Place remaining soup once it's cold in the fridge.
then heat as you eat adding the miso to each serving you reheat.

If Bill could eat this twice a day through this process he will BOOST
his immune system!
Sorry the measurements are not exact but as you make it you will find
your favorite rhythm and taste!
I loved meeting you yesterday and I am thrilled to be able to share this path!
Good luck and keep me posted!
With tons of love
Mee!

Chemo 3 Complete

Completed chemo 3 this morning. My white counts were at 1000 prior to the treatment with Neutrophils at 290. This is a scary place to be right at treatment time. My Dr's assistant was not inclined to give me Neupogen prior to the weekend. As such I was prepared to not take my Chemo. After a second consult, she agreed to give me Neulasta tomorrow. Neulasta is like a time release version of Neupogen. This will give me confidence to fight infection through the weekend. So I need to get through tonight without a fever to avoid the hospital. Cross your fingers.

Neupogen has a side effect associated with the B in ABVD. They must be administered 24 hours apart. I would have much rather taken the Neulasta first followed by the Chemo, but apparently the toxicity risk it just too great.

I have a low grade headache and am going into standard headache mode.

Massive thanks to Scott Sears and Flyte for hosting Karen's birthday dinner present. They even took extra care in the kitchen to ensure sanitary conditions for my condition. I don't deserve such good friends. Scott you are truly a good one. Thanks for topping off a perfect day.

Chemo Experience

I considered doing a writeup on the chemo experience, but I ran across this guy's blog. There is no way in hell I could top it. Funny stuff!

Blood geeks

Yeah, I decided to graph my bloodwork numbers. WBC is white blood count. Neutrophils are a particularly kick ass form of WBC. We like those. They are typically expressed as a percentage of WBC, but I did the math in the ol' spreadsheet and displayed the actual numbers. RBC is red blood cell count. I couldn't really mark where I had chemo and Neupogen so I'll list it here:

Chemo 2/6
Neupogen Shot 2/19
Neupogen Shot 2/20
Chemo 2/23
Neupogen Shot 2/27

Thursday fear

So I sorta felt extra crappy on Thursday. It was similar to the feeling I had before I ended up in the hospital from neutropenic fever last time. I was worried about a potential for white cell drop. I had this haunting low-grade fever all night Thursday. It peaked at 100.3 and I'm supposed to go to the emergency room at 100.5. Needless to say, I put a rag on my head all night and didn't sleep.

We dropped the kids off at school and made a semi-surprise visit to the Clinic at Vanderbilt. I had blood-work drawn and within 20 minutes had my white counts (2,800). This is down from over 14,000 for those of you keeping up. Plenty of you probably see a disturbing progression in those numbers. My counts were wiped from 14k to 3k in 4 days. I was really worried that they'd be sitting at zero by Sunday and I'd be stuck heading into the emergency room.

Dr. Greer agreed to a Neupogen shot plus we kept our regularly scheduled Monday visit for blood work as well. I'm going to graph this to try to create a predictor of my response to Neupogen. As it stands, my gut feeling tells me that my body is wildly sensitive to the effects of chemo and is also wildly affected by Neupogen. While it would be nice to smooth out the peaks and valleys, I am grateful that I respond to Neupogen.

My experience with Neupogen was that the first shot did not cause bone pain and the second shot did. This is a flawed observation. Now that I've had the opportunity to receive only one shot, it's clear that the pain in my lower back / pelvis is just delayed by 1 day. The pain is moderate compared to the pain of two shots separated by 24 hours. Two sequential shots created pain that was basically unsleepable (it's my new verb, shut up) without a pain reliever. One shot is sleepable for me.

I had pretty serious chemo brain through Friday evening and it just 'broke' Friday night. Part of me wonders if a dwindling white count adds to chemo brain. I had this great idea for a PORT that constantly analyzes my blood content and that I could plug my iPhone into. Or better yet, some sort of meter like the blood oxygen monitor that is non-invasive and can relay white counts via wifi to the iPhone.

That's the update. I'm hoping that I've avoided a hospital stay for this session and learned a valuable lesson about managing my white counts. It's a relief to have a plan. Oh, and my superclavicular nodes are reduced visibly and to the touch.

Sincere thanks to my friends and family. I hear that Emily is organizing a run. Carneal, thanks, enough said. Tric, make the hat but I may not lose my hair, shave Tim's head either way. Day 23 now. Carey, thank your mom (UT fan making a Vandy hat must have been very painful). Rick and Lisa, thanks for taking the kids far far away. Words cannot describe.... Haynes and Dana, thanks for the moral support. TP and Kellie Conn, thanks for the calls.

Second Chemo Treament complete

I feel like a veteran already. Step One was to get some bloodwork completed. The results: my white count was at 14,200. Go Neupogen! That stuff rocks. Platelet counts were good and red blood cell count was marginal but still in the safe zone. The ABVD regiment took about 3 hours as expected. Starting to get that gentle hungover feeling and have taken the first drowsy-style anti-nausea drug. The next few days will be a bit slow.

We learned that the body is most run down 7-10 days from Chemo. As a precaution, we decided to do white counts 6 days from today. The thought here is to get a Neupogen injection on day 6 to help weather days 7-10 if it seems necessary.

1/6 complete, March 5, I'll be 1/4 through.

Home again

I came home Friday night. Karen had completely disinfected the house and Lisa took the kids with her to Ohio. They were all sick in one way or the other. They are on antibiotics and hopefully will return germ free on Sunday evening. I cannot wait to see them. It's been about a week. It was a great feeling being in my own home and sleeping in my own bed. It's nice to be back.

Checking out of the Hospital

My white counts came up to 2300 after the second Neupogen shot...from 600 the day before. It came at a price during the night. I had an exceptionally sore lower back and combination heartburn, chest pain. Very uncomfortable sensations all around. They gave me a unit of Morphine which only dulled the lower back pain and made the heartburn worse. Whatever they gave me to treat the heartburn didn't work at all. Honestly, I'm not positive that it was heartburn. The pain as it turns out is the Neupogen's effect on the bone marrow. It stimulates white blood cell growth which occurs in the marrow. Once I realized this, I made some peace with the pain knowing that it was fixing me.

Your mind and body play tricks on each other at night in this condition. I went through bouts of trying to will the pain away followed by tossing and turning. I got up to research others' experiences. This was probably the most helpful activity.

The doctors justify no use of ibuprofen because they don't want it to mask a potential fever. I understand it in my case where they needed to verify 24 hours of zero fever before I left the hospital, but for future doses of Neupogen, I'm going to take some Ibuprofen shortly after the shot. For me, the pain lasted about 12 hours at a higher threshold than I would care to impose upon anyone for any reason....lesson learned. The reward was clearly evident thought. I had counts of 2300, up from 600, 6 hours from the injection. Counts of over 1000 are basically mandatory and above 4000 preferable. Since Neupogen continues to work well after the 6 hour mark (and since my back still mildly hurts), I think it's safe to say that my white count will continue to rise for a period of time.

The silver lining to this story is that the nodes above my collarbone feel visibly less bulky, still there, but not nearly as chunky after just 1 treatment. In addition, Karen and I have had some of the most heartfelt conversations and crying sessions as we both realize how bizarre and fragile this short ride really is. I can honestly say that I've never cried as hard as I cried once I heard that my white counts were up to 2300. Besides my fever breaking the night before, it's the first glimmer of hope that these procedures actually work as intended.

I'm not sure how you'll achieve this in your life, but have you ever had tears of joy? I'm not talking about the few tears that fall out while you enjoy a happy moment. I'm talking about a full-on blubbering that you can't stop because you are so happy and relieved. It was a first for me and it is an incredibly liberating experience.

Proof of very attractive nurses

Me in the ER

Hot Nurses

So,

I seem to be getting more than my fair share of hot nurses. One hot nurse was shadowing another hot nurse last night so 2 of them came into the room each time. Then, moments ago, another hot nursing student came in to take my vitals. I thought it was worth mentioning. Those of you praying for me, throw in some hot nurses while your at it. Quite the morale booster!

Temperature has broken

Sitting in the hospital, it's almost 7am on Thursday. I am so relieved the my temperature seems to have broken. My latest white blood cell count is at 600, up from as low as 200. The Nupogen shot was likely responsible for that. It's a steroid that stimulates marrow production of blood. Unfortunately, it's an equal opportunity stimulator. It will stimulate the cancerous white blood cells in addition to the healthy ones. It seems that the Dr. who told me that was wrong. Awesome.

Conclusions: Never put myself in a position to get sick again. Our house will be sterile and I will have a specific room in which to work, wash my hands constantly, wipe down surfaces, eat only cooked foods, wear a face mask anytime I am in public.

How quickly things can change

I woke up yesterday morning with muscle aches. This escalated into a fever of 101.2 by 1:30pm. Karen and I went to the hospital to have it looked at. After some blood work, they found that my white counts were at 600, significantly lower than the 1000 minimum. They put me on about 5 different antibiotics through my PORT. They finally moved me from the ER to a hospital room at 2am. The fever was really not managed until around 6am. It was a huge relief when it came down. It's almost 11 now and I am tired, but cannot sleep due to a headache.

In a nutshell, I have learned a valuable lesson regarding the importance of remaining isolated from germs. The train show on Sunday was clearly a bad idea.

Money

I finally found some information that is interesting and not morbid in any way. Most of you know my small obsession with Capitalism. I recommend insurance. Remember the PET scan that I talked about sleeping through? The price tag is equivalent to sleeping through 2 months of classes at Vanderbilt....come to think of it, I may have done that too. Sorry Mom :(

I'm posting images of my current charges so far. It is really quite staggering that I ran up a $30k bill in under 1 week. Under 1 week and I wasn't even hospitalized through any of this! Damn! Jeff, if I don't hear some color commentary from you, I'm going to be truly pissed.

Summary


Medical Center Summary


Medical Detail 1


Medical Detail 2


Medical Detail 3


PORT Installation

Lung Performance

This is really just so I can remember to ask my doctor to look at my lungs after the 4th treatment when I go in for my PET scan:

Fewer posts means I'm feeling better!

Well, ever since day 5 (it's now day 11), my overall feeling has been 'normal'. I still tend to run out of juice after a half day, but the hangover feeling is basically gone. Counting the days until Thursday when my next chemo round happens. I'm actually looking forward to it. Sorta odd, but if it's the solution, gimme more!

The cuts are healing well and the hair is still firmly in place. Tim came over to the house with Bella and Matthew and crashed here on Friday and the Chandler's came over with their kids on Saturday night. Thanks again for the kind words. I'll try to post another blog on Thursday. That's my next chemo day. Thanks for all the kind words...

Day 5

I've talked to a few of you on the phone trying to explain how chemo 'feels'. Imagine waking up with a bad hangover. Now, stumble out of bed, get some liquids and a decent breakfast in you. Then, after the headache goes away, that's how you feel. It's like the rest of the day after the bad hangover. Since my friends are reading this, I know that you have all experienced this on a regular basis, until you had kids at least, well at least you should have stopped such childish behavior after having children.

Speaking of children, does everyone know that Tim is working on number seven?

The last 4 days were a bit foggy. Today felt much better. Thanks for all the comments. It is great coming back to the site and seeing your replies. Jen Millard. Talk about a blast from the past. Hope all is well with you.

Sleepy Time

I woke up Saturday morning, ate something, dropped a buddy's server in the datacenter and stopped by Karen's sister's house to say hi and fell asleep for for 3.5 hours. Karen woke me up, brought me home and I slept from 9pm to 9am. Just woke up a few minutes ago and decided to write something. Thanks for all the nice comments on the previous post. Jeanne, it's good to hear from you as well. I've eased off the anti-nausea medication and am hoping that I can keep it that way.

In a nutshell, this first round of Chemo has just made me tired for the most part. Karen found this guy who markets hilarious products. Here is a pic of one of them.

Subtle effects night 1

Five hours after my first treament, I'm feeling relaxed with a moderate headache in the top of my head. I usually get headaches in the temples so it's a strange feeling. The nurse said that the anti nausea provided during treatment was supposed to last 12 hours, but it seems to be wearing off a bit sooner so I went ahead and popped the first oral med for that at 10pm. The feeling is a bit surreal, but not painful or particularly frightening. Probably the oddest things are the somewhat random cold sensation and hot flashes. Disconcerting is probably the best word. Oh, and Jack said that my breath smells like 'poop'. That's his generic word for bad. I brushed but the chemo is so strong that it actually leaves you with 'medicine breath' to a pretty high degree. Oh, yeah and the fairly cute girl who administered my chemo indicated no 'hide the hotdog' for 48 hours. I think she's trying to break up my marriage in her passive aggressive way. I don't blame her. My port is pretty hot. I'm writing because I'd rather not try to go to sleep. Hoping I will just fall asleep at the keyboard.

Tim Moses and I had a great video chat over iChat while I was receiving the treatment today. Somehow he managed to keep his clothes on. Jeff, you're next.

So the way I see it, life is a beautiful thing. It's here for us to take chances, pursue dreams, fall in love, carry on meaningful conversations, laugh at one another, show compassion towards others, find the win-win in business and personal interactions, and teach our kids the same. I think I've always known these things and have practiced it within limits. We all know the areas in which we each fall short and are often afraid to admit it. But fixing the little defects in ourselves one by one can be the most rewarding achievements. Even the tiny ones.

No to overly politicize this, but more than ever I believe that proper treatment of various ailments cannot be varied based upon ability to pay. I am no more deserving of the incredible professionals at my disposal than a destitute homeless person. My life is no more important than his or hers. I'll happily help foot the bill for those in need because I strongly believe that our forefathers missed a major point when they stated only life, liberty and pursuit of happiness. Health would have been a nice word along with those three.

Writing helps keep my mind off of my body so I expect I'll be doing it often.

Home now

News flash. The chemo with port is definitely not the hard part from my perspective. My parents picked up Jack and had dinner ready. Thanks guys! Also, thanks to Karen's mom the night before. Family is a wonderful thing. Sources say that late Saturday and Sunday will be the worst and the hair should start going away in about 2 weeks. Right now, I feel great with no perceived immediate effects of the chemo drugs. More as I know it.

Hooked up to the machine

Well,

I'm sitting in the room getting toxic drugs pushed into my body. I'm on the "D" of my ABVD regimen so I'm almost finished. Apparently the "D" takes about an hour. It's wrapped in aluminum foil so it's not exposed to light. Light breaks it down and reduces its effectiveness. So, I decided to include some pics as well...enjoy!

Good Drugs

Thanks Chris for this clip....

First Day of Chemo Tomorrow

Looking forward to the first treatment. I am anxious to see how my body reacts. I've heard so many conflicting reports. Jack told me that if I lose my hair, he's going to shave his little head. Love that kid!

PET Scan

So they made me drink a pretty tasty red juice and then injected me with a radioactive substance. I had to wait an hour. I slept because I was still tired from the PORT installation. I had a total of 200 units of versed for the port installation, at least I think it was versed. That stuff is great! "Hey can I put a hole in your chest?" Sure, that's cool.....whatever man. Unbelievable.

I basically slept on the CT platform during the PET. I probably went in and out on it for 45 minutes while half asleep. It was actually incredibly relaxing until they did the final CT. CT's sorta suck because of the synthetic iodine injection. When it goes in your IV, it warms your groin (feels like you've peed on yourself but haven't). It creates an odd metallic taste in the back of your mouth and, for me, causes momentary stomach nausea (maybe 1.5 minutes). It's just long enough to make you think you need to puke without actually puking.

Once all this was over, I was freaking wiped. Came home, took 800mg ibuprofen, ate a big roast beef sammy, a banana, cookies and drank fluids. Karen purchased all kinds of things for promoting healthy flora in me to reduce chemo toxicity. I'll detail it in another post. I'm pretty tired.

Versed is my friend

Well I've completed the echo scan and the port so far today. The echo was pretty much just an ultrasound for the heart. Completely non-invasive. Cold and squishy. The live video of my heart was pretty cool to watch.

The port process was intimidating at first. The procedure is completed while conscious. But, Valium and versed did a remarkable job of allowing me to not care. 17 cm tube connects the port to a vein which leads directly into the heart. The tube is pushed all the way into the heart. Those under going chemo are making a wise decision to have a port installed based on my experience so far. While you might be scared at the prospect of a 17 cm tube being inserted into you while conscious, I can assure you that it was a painless and relatively pleasant experience.

Now we are waiting for the pet scan. Should be able to head home in a couple of hours and eat! I wonder if I'll remember dictating this to my wife?

I have Hodgkins Lymphoma

Thanks to my friends for caring. I'll keep a diary here including pretty much everything that I'm going through. Hopefully it can serve to keep my friends informed and maybe help others who have to go through similar tests and treatments.

The process of reaching a diagnosis was random. I've had bouts of being tired in the afternoon with lower back pain and a low grade fever off and on for a couple of months. A drink or focused activity seemed to exacerbate the problem (I just thought I was getting old). I am 39. After one bout of fatigue in Cincinnati, I woke up with swollen nodes above my left collar bone. The Internet is like a horror flick when you plug that symptom into Google.

My primary care physician ordered a chest Xray and, based on the result, ordered a CT. They found a small mass in my Media Stenum (mid chest) in addition to the left collar bone nodes. After a visit to an Oncologist and another CT of my abdomen, we found 2 more spots. So 4 swollen lymph nodes.

We had a surgeon biopsy the easily accessible node in my collar bone and the finding was nodular schlerosing hodgkins lymphoma. I am getting a PET scan and ECHO and a Portocatheter on 2/4 and Chemo starts 2/5. Side effects vary, but I'm just happy to get this going. The PET is the best indicator of where the lymphoma is an how active it is so we use the results of the PET to determine effectiveness. The ECHO is a test to ensure my heart is strong enough to handle the rather powerful drugs. Most likely this will come back positive. The Portocatheter is pretty frankenstein if you ask me. It's a port in my chest where they can put in medications without having to stick me in the arm all the time. I hear that it's a smart thing to do. Needless to say, I'm not looking forward to the....er installation.

The chemo will last 6 months and I receive 12 treatments (1 every other week). Doc says I will lose my hair. We already know what that looks like houseboat crew! Talk about life imitating art...the good news is that I should be done with this by the time August rolls around.

Feel free to post comments and questions here.