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