HNY!! Goes without saying.

Hello all, and talk about the need for a NY resolution. At the very least minimal blog upkeep!

So the update: I am back in Baltimore now as of Dec. 28th, having completed my last dose of chemo on 12/8, then celebrating Christmas with the fam (although sadly less than expected number of fam, with Robert and kids canceled by ill-timed Nor'Easter). The ride back was uneventful, split over two days.

My blog suffered along with me. I guess I wanted all to be perky and upbeat and reassuring to everyone to show how strong I was and how wonderful everything was going despite this nasty diagnosis. The truth is that Cancer Sucks (as stated by buttons worn on the nurses' lapels at the chemo center) and my mind and body just became worn out and down by the barrage of poisons and run of complications that I had. I didn't want to be a bummer, and I guess that most of you could read between the lines (or lack thereof HAHA).

The last half of chemo I received Taxol (a drug which my very own Dad was principally involved in bringing to clinical testing- a story I wanted to tell but ran out of energy to do so) and Taxol had its own panoply of side effects. While the horrible nausea was absent, the new mix of severe bone/joint pain and neuropathy was in the package. Walking became painful, and I backed off on my refreshing and enjoyable doggie walks. The neuropathy involved that feeling one feels when an leg falls totally "asleep", I mean TOTALLY, and then "wakes up" with that not classical acute pain, but a severe degree of discomfort, tingling, and weirdness. That feeling was near constant for fingertips and feet. Typing was hard and between the bone pain and the feet waking up, movement was difficult. Pain treatment ensued which escalated from Advil-type meds to narcotics, to a narcotics patch. The pain was mostly, but not totally controlled, plus I felt like I was losing my mind at times. La-la land is not all that fun.

So, that is the summary for most of December. The pain is much improved now and I have my mind back, although I am still on meds and weaning slowly as the symptoms continue to subside. Even though the drug is gone, the damage is done and these effects can last from weeks to months. It has been 3+ weeks since last dose, and I look forward to continued improvement.

The good news is that despite the fireworks last night, I had the best night's sleep I've had in months; thanks to being in my own bed and my bed being a Tempur-Pedic bed (one of the best personal indulgences one can indulge in)! I also woke up with my mind working and with energy to "do things", and I feel good today. That is a good thing, to feel good. Really. Until you don't have it. I am so looking forward to just feeling good frequently! And I know it is already happening.

The last treatment phase is radiation therapy (local, not whole body) which I will need daily (except for weekends) for 4-6 weeks, and I've switched to Johns Hopkins for that and further care. I meet with the radiation oncologist on Jan 5th and will know more details then. Somewhere down the road after that...reconstructive surgery...YAY MORE SURGERY! But I am pulling a Scarlett O'Hara and I am not going to think about that today, I will think about that tomorrow. One step at a time.

So that is the update, and I am looking forward to a better year in 2011. What a 2010. So much still to think about going forward. But I look forward to getting back to work, continuing to learn in this lifetime of mine, and keeping all of you in my life. Thank you all, truly, for all your kind cards, letters, bits of pink-beribboned clothing and accessories, and mostly for keeping me in your thoughts, and for your best wishes.

So best wishes for a Healthy and Happy New Year to All! Really. Truly. Especially the Healthy and Happy part. From my heart.

Oh the humanity! The profundity of blog neglect!

Between not having wonderfully reassuring news, or not feeling up to writing about any that I did have, I have not earned my keep as a blogger...oh wait, I'm not getting paid.

But I am sorry if I have worried anyone during my most dramatic blog vacuum....I will make a concerted effort to keep you all better informed. I think I let the blog entry that I would have had to write (to make up

for the missing month) grow so huge and time-consuming in my mind that the very immensity of it became a further deterrent to reactivating the blog. So as to not scare myself away, I'll try to keep up with smaller entries, and not worry about saying anything profound, entertaining, or changing the world from my laptop.

What finally prompted me to write was my growing shame of not making the whole blog-reading world aware, in the midst of this season of giving thanks-- of how THANKFUL I AM for all of you-- my family, my friends, my colleagues-- who let me know that you care. A silver lining, if I had to pick one from this experience...would be the bringing-into-the-light of how many kind people of good character that I have been gifted with finding in my life.......and that they like me, l'il ol' me.... (I feel like Sally Fields...)

Some folks along the way have also told me that I can be, at times, very direct, that I always seem very confident, and even intimidating! (and most of the time I am not feeling that way....) The real truth is that I am quite a squishy softie inside, and conflict and criticism affect me deeply. Some days the best way I can reassure myself that I am a worthy person is that all you good people are my friends and care about me.. and as you all are a great bunch that I hold in high regard, I must occasionally be doing some things right, as I muddle through this life... because of the people I befriend along the way.

Most touching recent expression of concern and support for me:

My nephew Jack wore pink laces in his football shoes during his championship game, just like all the NFL players wore various pink items...gloves, hats, etc. during October (Breast Cancer Awareness Month). My 11 year old nephew is aware, and he loves me. He doesn't even care if his friends see me in the glory of my baldness when they come over. He just introduces me and moves right along, he is such a great kid! These things are the silver linings extraordinaire.

And more to come!

Potatoes, shots, and valuable health.

Human again! Taking a bit longer to bounce back from the chemoas the doses add up. It is so good to wake up and actual feel normal. And to have an appetite! I was truly hungry for the first time in a while, and I went to Whole Foods an bought Lots of Expensive Food. And then I ate too much, which is not a good idea either, but it felt so good! I had cravings for unexpected things. Like I just wanted potatoes. Potatoes. The golden Yukon buttery kind in chunks and boiled with butter, salt and pepper. Yum. Who knew. And coconut sorbet.

Currently I am minding the farm alone, the family is off for a long weekend in Orlando. I have become the dogs' mama. They follow me everywhere, sit in the chair/couch I am sitting in, and they have mightily tried to come in my bedroom and jump in the bed, but I draw the line there. I would come out of the bedroom and they would be just sitting there waiting for me. I had to bring up their little beds so that they would sleep outside the bedroom and stop trying to sneak in. I would hear little feet and their dogtags and turn on the light.Maggie or Teddy would act shocked that they had been caught, and would slink away after repeatedly being told OUT! They do wear you down, they just want to BE with you. But I can't have an itchy bedroom.

Also getting a look at the medical bills. This is another aspect of being on the "other side" for me. I don't see the bills generated by the care I help deliver; I bill for the services but the rest of it, and the hospital bill part, happens totally separately, and I have to admit I like it this way. I know NICU care is very expensive; but it is enough to keep up with the knowledge and practice in the field. The business part of it definitely never interested me, and the billing part of it is something I must do to justify my position.

So I noted with interest the cost of one of the drugs I get every 2 weeks. In fact, it is the drug that allows me to get treated every two weeks instead of every three weeks. A serious rate-limiting side effect to many chemotherapy regimens is the drop in the white blood cell count, which increases the risk of developing serious infections from almost anything including exotic infections. A drug called pegfilgrastim is a growth factor for white blood cells, and is given as an injection the day after chemotherapy. So, it not only prevents the WBC from getting very low, it also permits the chemo to be given at shorter intervals, called "dose-dense" chemotherapy. These shorter intervals enable the chemo to hit the just barely-recovering fast growing cells when they are more vulnerable in the cell growth cycle, and has been shown to have improved outcomes. Yay! And only available since 2002. This is how fast medicine is changing, exponentially fast.

But, the price tag? $7000.00 a shot!

Now, I am fortunate enough to have medical insurance and the resources, but you can see how this would change the life of someone without insurance completely. And have to make choices. And maybe use up life savings to get the best care. Or go bankrupt. But, the drug costs that much to develop and test. And it turns out that it is cost effective too--one intensive care serious infection hospitalization costs about 50K.

So the answer is...the care is expensive because the care is REALLY GOOD. Better drugs, care, treatment options, outcomes....more expensive. But Americans don't want to pay more for the improved and constantly improving standard of care. I'm not sure people really understand how incredible the care available to us really is. I really don't know what the answers are, but I have seen what's available in most of the world, where you're lucky if the water is clean. The hospital in Uganda where I worked for 3 weeks, a major hospital, ran out of paper one day. The WATER didn't work one day.

Excellent health care costs excellent money. So are we as a society going to accept different standards-of-care based on ability to pay? This would result in stratified outcome measures (% cancer survival, life expectancy, newborn mortality rates)--based on socioeconomic status. That would be a repugnant situation indeed. It is not the kind of society I want to live in. Go to a poverty-stricken 3rd world country and see it for yourself, the poor and sick basically linger outside the hospital begging for help. Clearly there are cost-saving measures to be identified and implemented (duplication, inefficiencies, etc.) that can and will be put in place to decrease the cost of health care, but as a population becomes healthier and lives longer because of better medicine and technology, it will cost more. How will we pay for accessibility to standard excellent state-of- the-art care for Americans? I think we will have to get used to thinking differently about the chunk of our own budget that must go to pay for all of it. And we should be expect to be paying more if they can zap your mother's brain tumor with a gamma-knife laser, or transplant a liver into your little girl, or inject a new drug into grandpa's eyes to prevent a common type of blindness in the elderly, or operate on an unborn baby to correct a birth defect before birth, or have the CDC swoop in to figure out what the hell is going on with the next SARS or Ebola or the next mutant virus to infect humans and wreak havoc, or save your life in a horrible car crash where you are helicoptered from the scene and are on the operating table in less than one hour, or build a bone cell scaffold to implant in a degenerating spine so that your own cells can support a new structure, ad infinitum. This is not cheap. We must get used to paying dearly for our valuable health. And be grateful that it is available to us.

How to solve this problem, I am not smart enough and I never took accounting (clearly). But the citizens of this country cannot have high expectations for the personal availability of the best care in the world, and still expect to pay a relatively mediocre, static, grudging fee.

Halfway Done!

Currently getting my fourth dose of chemo, that is halfway done!

Can I get a what-what for the nurses and doctors here at the East Cooper Medical Center Clinic, located less than 10 minutes from my house, of the Medical University of South Carolina. This is a clinical office and infusion center setting, just for taking care of patients. Here I get the benefits of cutting edge academia combined with a smaller, more personal setting away from the hustle and bustle of a busy academic hospital center. I know all the nurses, and see the same doctor when I come on every other Wednesday for chemo.

Don't get me wrong, I am also grateful for the medical center downtown, and have benefited greatly from the diversity of expertise there as well at the hospital and the Hollings Cancer Center. But if feels a bit more homey and personal here in Mount Pleasant if all is going well.

Otherwise, enjoying the GREAT SEASON so far for the Ravens! We actually have an offense this year. Really! And the GREAT SEASON that Jack's team is having- only one loss and a BIG game tonight! And then, playoffs......this is a pic of Jack last year, I can't believe the intensity in this little guy. He absolutely loves the game!

Delay In Updates Due To....

Well the Breast Cancer Treatment Wheel of Fortune spun; apparently someone asked for a vowel and the answer was immediately obvious: D-I-V-E-R-T-I-C-U-L-I-T-I-S. Which involves a lot of abdominal pain and other stuff. Fortunately this was a brief overnight stay in the hospital. With pain under control, and another slew of medicines, they sent me home. Over the next few days, I started feeling better just in time for Chemo Dose #3 YAYYYY! So here I am. Looking sooo forward to the Ravens/Steelers game tomorrow, there will undoubtedly be blood on the field. And these Philly fans I'm staying with want to see what happens with Donovan McNabb coming back to Philly and Michael Vick, but with the Redskins--great games to relax to. I am hanging in there!

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.