Now I Know

--What I look like without hair. It it impossible to imagine. I even thought about finding an app that would do it automatically with a pic, or photoshopping one of mine, but never got around to it. I'm getting used to it--it would have looked better years ago I think. But we always think that, hair or not, I guess. In the middle of one particularly dismaying hair loss moment, my almost 9 year old niece softly told me with her big blue eyes, "What always matters is what's inside. And what's inside is beautiful." Unprompted. Seriously. And that is why I am Down in Dixieland.

After a couple days, I went and got it all taken off, otherwise you REALLY look like a "cancer patient". Bethy's hairdresser offered to help me at her last appointment when she found out I would be staying with her. She has done this in the past with clients and their families and friends. She stayed late, after her last appointment, out of concern for my privacy, although I did not ask for that. She was so kind and upbeat, and she wouldn't take a cent for the service, saying it was her way to give, and that the way to pay her was to get better. She has 3 aunts with breast cancer.

When I came down the stairs wearing the scarf that Bethy bought me, my 11 year old nephew Jack yelled "DOO-RAG!!" and pumped his fist. I was also told I had the Little Steven (in the E Street Band) look going. Talk about a cheering section!

Also noteworthy is the phenomenon of how your head affects how hot or cold you feel. Draft on your head, chilly. Sun on head, hot. Amazing. What they tell you about losing heat faster through your head is true. There is a lot of blood flow up there, at least on good days, recently demonstrated by my forehead-to-iron-railing force experiment in May. Which is healed, with a scar that I can see well now, having previously disappeared into my hairline! Observation of life with a scientific eye, its what keeps a true nerd happy.

Interesting also was the close association (Sept. 19th) with the Official Talk Like a Pirate Day. Was this a mere coincidence? HARRR. I'm not sure.

http://www.talklikeapirate.com/piratehome.html

2 rounds chemo done, 6 to go!

The Strong Stuff

This is one of the medicines, doxorubicin, of the strong type that I received for the second time yesterday. Here is what it looks like in the vial, and going into a vein through the tubing. Hence its name "The Red Devil" by some of the patients who have been treated with it. This moniker is also derived from its wide variety of side effects , which the doctors try their best to control with other medicines. But, the same mechanisms that make it a very good cancer cell killer work on other rapidly dividing cells in the body, so one has to take the good with the bad. Strong medicine, strong effects, and always better side effect medicines and cancer cell drugs becoming available. It is amazing, the amount of work that has been done. And the benefits of science-based medicine, and the benefits of the scientific method. Here is how it works:

Doxorubicin is known to interact with DNA by intercalation and inhibition of macromolecular biosynthesis.This inhibits the progression of the enzyme topoisomerase II, which unwinds DNA for transcription. Doxorubicin stabilizes this topoisomerase enzyme after it has broken the DNA chain for replication, preventing the DNA double helix from being resealed and thereby stopping the process of replication.

Translation: See the picture. The red molecules inserts itself into areas of DNA that is being unwound for gene decoding and translation into protein molecules. This essentially prevents the cell from building the proteins that it needs and from copying the DNA molecule for replication and eventually cell division. The most rapidly growing cells in our body, like CANCER cells, hair-growing cells, cells in our GI tract, and cells in our bone marrow (producing white blood cells to fight infection, red blood cells to carry oxygen, and platelet cells for clotting) ALL take a hit and are knocked out. That is why we lose our hair, have nausea, vomiting, mouth sores, lack of appetite, and sometimes need platelet or blood transfusions (these levels are monitored each time I get chemo). The point is: THE CANCER CELLS ARE RAPIDLY GROWING AND GET KNOCKED OUT TOO. And just when they are thinking about recovering, well WE HIT 'EM AGAIN, THE BASTARDS. And valiantly try to manage all the side effects. This type of drug is a CYTOCIDE, a CELL KILLER. And I hope it is doing its job very well. It is only one of two drugs I am getting now (every two weeks) then I start with one additional drug which has a very interesting story. Really, you say......Really! Yes more excitement to come!

And just in case you wanted some more exciting scientific insight--

HERE IS THE MOLECULAR STRUCTURE!! That sneaky molecule. (My dad seems to like it :))

Hanging in there, hello to all.

Better Stuff for the Soul.

Burning controversies are not good for the soul, nor, it turns out, a gas fireplace. Anyway, more important are the recent words of Imam Feisal Abdul Rauf, in what is finally a high profile, reasoned, moderate opinion calling for a rejection of extremism in Islam. And he is apparently a Giants Fan.

http://www.cnn.com/2010/US/09/13/new.york.imam/index.html?hpt=T2

Also turns out, walking happy doggies Maggie and Teddy on the beach is very good for the soul, and forehead sunburn. And auto-pedicure! Trying to fend off the spectre of chemo on Wednesday. Doing great.

BTW

Please pass this on, join me if you think it worthy.

Book Burning Called For!!

My reverence for all books, stories, and pages bound, leads me to become nauseated at the thought of any burning of books. HOWEVER, the power of words is essentially the power of IDEAS, and in fact is not bound along with the material paper and ink.

The wondrous thing about the USA is that ideas are allowed to flourish because of the freedoms explicitly, in words so carefully chosen, and brilliantly codified in the First Amendment of our Constitution. Despite our National Archives best efforts, the paper and ink of our Constitution will decay. But the ideas of this document will never decay, ever. The ideas and success of these guaranteed freedoms are in our minds, in our reason, in copies, in electronic media, in countless copies that exist in one of the first attempts to declare: "These are the rights innate to being human"; to Have Ideas and Discuss Them Freely. Including Religious Beliefs. Without Fear.

Paper and ink were merely the available media at the time in which to mark these ideas for the public to see. These ideas are with us as a people and as a global phenomenon.

Those who burn books utterly miss this point. This is a sad symbolic gesture of the past, of repression of ideas, of destruction of the only tangible media of communication at the time. It is pathetic.

Ideas, and religious beliefs, are transcendent. They cannot be destroyed by oxidation and heat. Any other reaction to this sad, limited pastor's actions endows him with a power which he does not have. He is free to believe as he does, without fear. And those who react otherwise imply that we should be afraid again. As free individuals, we are not obligated to revere that which others deem to be sacred. That is freedom of religion, freedom of speech, freedom of ideas, America at its very core.

Reason and our constitutional guarantees should make this burning a NON-event. However emotions run so, so high that many cannot see the fallacy of their reaction.

I therefore call for a disarmament of this purported event. I will select several books of great meaning and importance to me and symbolically burn them tomorrow in a safe manner. This is done to honor those who defend our right to do so; to emphasize the freedom of belief and ideas, to illustrate the truly ineffectual nature of the gesture. I know these ideas. I know these books. And so many others do too. Let him burn.

Whew.

This chemotherapy stuff is not for the timid. It drips into your arm, you're like this isn't so bad, then WHAM you are knocked on your bahonkey for quite some time. It is like, OK, we are going to put you on the tilt-a-whirl mad hatter cup ride, and attach several thousand leeches to suck all life energy from you, and when you get off we will tie 30 lb weights to each of your limbs and neck and let you get on with your week. And we will intermittently come and take off some weight and put it back on again, when you think its gone for good. And more leeches. And more rides. While you smell fried food, you know, like at the rides.

Anyway, started feeling fully human about Tuesday, and catching up on oh, pesky bills, taxes, etc before the next round. Glad to be moving forward. Thanks for all the well wishes.

On My Way

Smooth sailing with the chemo yesterday, now hitting a bit of rough seas. Nausea, headaches, but lots of good medicines to control the side effects, and lots of good care.

Glad I finally made it. To bring the story up to date, on arriving in south carolina, I saw an excellent plastic surgeon who scheduled my to have the expander removed 2 days later. This went without a hitch except for some post-anesthesia reactions that had me walking about the house like a herky-jerky Frankenstein (Fraankensteen)?? This too passed. Apparently my wacky immune system had formed some sort of capsule around the expander and planned to have nothing to do with it. Gotta love the consistency of this wacko immune system. Anyway, happily home with some drain leaking, (yes, another one!) fluid accumulating issues, however was about to have it pulled a week later when the night before...random severe illness and temp of 103. To doctor in the morning where they promptly admitted to the hospital for wound infection, 5 days of antibiotics and 2 more weeks delay till the start of chemo. Oy. And I won't even tell you how the transport guy took me to the wrong hospital from the clinic, Bethy ended up driving me herself and I showed up to the floor in a gown walking in with the IV sick as a dog. Yikes the logistics! But they took good care of me after that, got alot better within a couple days, went home and finished my antibiotics. I am just chock full o' medicines. So it was a great day when I finally got to start the next phase of treatment, and even though it's not great fun, it is progress. Bethy and I also tried a yoga class last week and I see if I can continue that to some degree as the treatment progresses. Kind people all around me. Thanks to all for all your kind wishes, cards, love.

No More Delays!

Even though I haven't gotten this blog quite up to date yet, there was still even more drama, I thought I'd let out the big news that I am getting my first chemotherapy dose today!! YAY. No more delays... and I thought that there was going to be one yesterday. I went to have a port placed--a thingie that accesses a big vein on the inside of your arm and then is sutured under the skin. So they just have to access that port for iv or blood draw instead of sticking you every time. So yesterday, feeling basically fine, I was ready to go until they took my vitals and my temp was 99.8. Not a fever, not normal, the dastardly grey area. So...they decided NOT to plant this in my body but...said lets see how you do overnight, and maybe, maybe we can give you the chemo through a vein. So home we went, and I determinedly took my temp 4-5 times, it was normal, and decided that the thermometer at the hospital was WRONG. Today, it was fine, so I got an IV, and into my veins the strong bad medicine goes. Progress....Next cycle two weeks, now shopping for hats and scarves with Emmy my 8yr old niece. Who has lots of opinions. And she is usually right. I really don't look as bad as this sickly lighting makes me look....yeah, it's the lighting...