aloha update

Just haven't been in the mood to update for a while. Been enjoying NOT doing anything here in Hawaii.

I'll just lay it out there so I can move on to bigger and better things: No change medically. Nothing is visibly (better said, palpably) shrinking, so I just hope that things are progressing slowly but surely. Last chemo treatment, lymph nodes disappeared quickly, bit popped right back full of cancer as soon as I go off chemo, so a full a quick reaction may not be what I want (I am not sure if that sounds rational or like I am grasping at straws).

I am getting treatment in Hawaii today (it is 4:15 am, and I am up crossing my fingers that my short positions that I took in the market on financial and the the Russell index weren't idiotic) up in North Hawaii Community Hospital and went up yesterday for a shot and ran into my track coach from high school in the infusion room, it was wonderful to catch up and reminisce!

He reminded me about an issue that I became aware of only last week when I watched Living Proof on a recommendation by Jennifer. It is about the approval process for a drug called Herceptin, which is one of the few drugs that fight cancer without killing you (unlike chemo).

We all know about clinical trials for new drugs. These trials have phases, the first usually being on people who have advanced diseases and are terminal, then they adjust the criteria a bit make changes, start phase 2, and so on, for 5-10 years until approval.

Now THIS is the interesting thing. Even if your cancer is responding to the experimental drug in a certain phase, and you are getting better, and you actually have a glimmer of hope of living, you MIGHT not qualify for phase 2 of the drug (due to age, medicines that you might have taken before, weight, too slow a response, etc). Whereupon the drug is snatched away from you and there is little you can do to get it back since the FDA will no longer allow you to receive dosage if you are unqualified for another phase of the trial, EVEN THOUGH 1), the drug is available, and 2) you responded positively to it.

Nutso, huh?


I have been having a True Blood marathon with my family as I don't have HBO and they have been talking incessantly about this show. Now I get why. It is like Twilight for people who no longer have to worry about their parents catching them having sex.

At first I didn't like the acting, but by the third episode I loved all the characters and couldn't wait to see the next episode. Vampires and sex and Louisiana. Very hot. Sookie, the main character, still bugs me a little bit because she is annoying, but do rent it when you get a chance.

Okay, my stop limit orders have been placed in case consumer confidence in nothing based in reality or Sasha and Malia's lunch menu at school send the market back up.

Gonna crash for a bit. Aloha!

In a much better mood!

Wow. All I can say is "wow" when I talk about MD Anderson. Now, THAT, is a real hospital. It is huge, beautiful, professional, and incredibly efficient. They have a thousand cafeterias which serve healthy and bad food (Luis has complained to the cafeteria managers at the hospitals I have been at about the quality of the food offerings), and it is generally a peaceful and tranquil place, considering it is a cancer center.

My doctor told me I was on the right track with the Herceptin treatments, except that he would not start me on Avastin (a drug I was going to start in about 2 weeks time) because it hasn't been proven to be effective. He also confirmed that my diet was fine, it wasn't going to help me, but if it improved my mindset, that was the most important thing. Which it does

When you have cancer, it is like someone placing you in the drivers seat of an automobile that has no steering wheel and the pedals are broken. You just have no control over anything. Now that I am eating much healthier, I at least feel like I have control of the accelerator. Not the break or the wheels, but at least something!

The best part was the Southwest flight. Although I have been in Texas tons, I have never been on a Southwest flight before. As soon as we took off and we were on the steep ascent, the attendant picked up the microphone and said," All of us flight attendants have had a really long day, we are too tired to serve the pretzels and nuts, so make friends with someone on the aisle."

Next thing we know, hundreds of packets of peanuts are flying down the aisle (which is at a 45 degree angle) and everyone is laughing and grabbing at the packets and passing them to their row. It was great, but it got better when we heard, "And here come the drinks!" And all these little bottles of booze come shooting down the aisle rolling past the peanuts. I don't think those got passed around as much. Luis had a nice screwdriver to relax him on the flight.

My phone died, and although it was the final excuse I needed to get an iPhone, I am still disconnected because I have no one's number anymore. So shoot it to me when you get a chance. And if you don't have an iPhone, yes it is just as good as you imagine. Better even.

Okay, so right by the AT&T Store was a Half Price Books. Of course I have 1000s of things to read, but I couldn't walk past it and not go in, and I pulled three books on cancer that I think might be interesting.

This completely revised edition of a 1994 title offers up-to-date information about the human body's own "host defense mechanisms" in the war on cancer, providing a multidisciplinary approach to treatment based on scientific studies and clinical experience. Quillin, a medical professional who has published extensively, has conducted nutrition studies with hundreds of patients in formal clinical settings. He discusses conventional therapies (chemotherapy, surgery), alternative therapies (macrobiotics, herbal and vitamin therapies), and related factors (psychosocial health, drugs, tobacco, immune dysfunctions). Appendixes list treatment referral agencies, mail-order nutrition products, suggested readings, nutritionally oriented doctors in the United States and Canada, and recipes using foods known to slow tumor growth. Written in an easy-to-read style, this work is informative, but some sections seem misplaced or redundant, and charts and graphs occasionally lack an identified source and are difficult to read. Still, this useful guide to authoritative alternatives in cancer treatment would be appreciated in public library or consumer health collections

My friend Jennifer told me about a movie about the making of Herceptin (already at the top of my Netflix list), which is, as I have said before, my best chance at making this tumor go away. There is also a book, which I found at the bookstore.

Her-2: The Making of Herceptin, a Revolutionary Treatment for Breast Cancer reads like a novel at first. Oncologist Dennis Slamon has spent 13 years "obsessed with a molecule called Her-2," which he believed "held the key to nothing less than curing breast cancer." The book chronicles the search to unlock the secrets of Her-2/neu, a protein that makes cancer cells grow quickly; the discovery of the Her-2/neu antibody, which resulted in tumors shrinking and, sometimes, remission of the cancer; and the development of the drug Herceptin. It is also the story of the women with breast cancer who participated in Herceptin's clinical trials, including Anne McNamara, who has been fighting tumor after tumor since 1978. The scientific and research-history sections are heavy and slow going, but Robert Bazell effectively juxtaposes the difficult scientific concepts and long research history of Her-2 with human drama. He keeps bringing the reader back to the threads of the personal stories we are following--especially the women with breast cancer and their determination to recapture their health. This is what makes Her-2 so compelling. -

And this one is a little more out there . . . but I have an open mind. This book discusses the etiology of cancer and it's therapies as it relates to fungi and their mycotoxins.


Okay, gotta go whip up a vegan dinner! Teriyaki tofu, soba noodles, and a veggie stir fry!

Back in the hospital again.

Luckily, I found that channel that is playing "The Mother of All House Marathons" and Luis had gone home to prepare his exams for tomorrow so I can watch it without feeling like a I am putting my husband through torture.

So why am I here when I was feeling so good?

Low white blood cell count + fever + cough = a Saturday Trip to the Emergency Room. I figured Saturday night in an emergency room was going to be most entertaining, but it was quite plain vanilla. Luis saw two kids busted up from a fight, but all I saw was very large Texans sitting around looking miserable.

This morning the doctor came in and told me that my red blood cell counts were so low I needed a transfusion, so they have taken blood to type and match so I can get some fresh battery juice (two units, each unit taking 3-4 hours, for those interested in the details).

I have AB Negative blood. So does Luis. Which is pretty cool, considering 1 in 167 people have this blood type. That is .07% of the population has it. This doesn't mean that it is hard for me to match however, I am the universal receiver of all negative blood types, as I can take A-, B-, O-, and AB-.

Unfortunately, my problems won't be solved with just some antibiotics and some vampire food. There is something going on with my liver.

The liver is the organ that breaks down (metabolizes) most of the chemotherapy drugs that I get. Unfortunately, some drugs can cause liver damage. As the doctor said, something with my liver is "off." Supposedly, the damage is temporary, and I read the liver recovers a few weeks after the drug is stopped.

Key word is "stopped."

I don't want to stop my chemo. There are other drugs of course, but I don't want to stop anything! It is like every time we are looking at the possibility of something positive, a new hope, there is one more fricking challenge thrown in my tracks.

Did you know that since my diagnosis I have not had one bit of "good" news? Yes, once you have been diagnosed with cancer, news that is "not-so-bad" becomes "good." And every test they run, every surgery, every biopsy, the news gets worse and worse. Can someone up there just cut me some slack for a bit?

Breath, Dana. It isn't so bad. Things could be much worse. Much much worse.

I just feel like this is fricking Iraq, and I am George Bush, thinking this is going to be done and clean and over with so fast and then there are all these complications that my small itty bitty mind can barely comprehend. And all I can do is keep on smiling and telling the myself and who ever will listen to me that this is all going to be okay in the end (history will determine if my actions were justified).

The good thing about being stupid is that it allows you to be a full fledged optimist because you really believe that everything is going to be all right. Optimists don't have to look at yourself in the mirror every morning and convince yourself to be an optimist just one more day. For yourself and everyone else.

And as I wrote someone in a message this morning, life is measured by relativity. You gotta be starving to really enjoy a feast. You got to be dealt a shit hand every once in a while to know how good your previous hand was (or how good your next hand could be). You have to be sad and depressed to really know what it is like to be happy and carefree. You have to be at war to fully enjoy the calm of peace. And the longer the war the sweeter the peace.

Be dumb (like W), don't over think, Dana, and focus on the sweet peace. Where is my unit of blood?

Books and Proteins

I have obviously had much time to read since I have been diagnosed and not working, so I thought I would share my favorite books. You won't see Catcher in the Rye, and will see some you have never heard of, but these have brought me joy multiple times throughout my life.



I am heading down to MD Anderson Cancer Center next week for another opinion on my cancer. It is one of the largest cancer centers in the world and has ranked as one of the top two hospitals in cancer care every year in US News & World Report (the other is Sloan Kettering). And I am very excited about what they have to say.

Very aggressive tumors like mine over express a protein called HER-2. There is a drug called Herceptin that only came out several years ago that works very well with people with tumors like mine, in fact, often times, melting them away completely.

However, 50% of patients show no response to this drug. MD Anderson has found that Herceptin uses a protein, called, PTEN to block a growth promoting protein called P13K. I want to know how much PTEN I have in my system, because people who don't respond to Herceptin usually have low or nonexistent levels of PTEN. If I do have low levels of PTEN, I can receive a synthetic PTEN that will block the P13K, greatly increasing my chances for survival!

Okay, to simplify this because there were a LOT of proteins mentioned above. Let's say that P13K is a mugger. I am in an alleyway alone. P13K pulls a gun on me and says he is going to kill me. Let's say that PTEN is a bottle of mace that I got when I moved to the city from my dad. Only . . . I don't remember if I remembered to put the mace in my handbag or not, and I don't want to move unless I know I have it because I might get shot.

MD Anderson can check to see if I have the mace, and if I don't, give me pepper spray that works the same way as mace, and I can immobilize the mugger!

Luis and I will fly down on Thursday after my Herceptin treatment and stay until Friday evening. I am looking forward to a very productive and informative visit!

I have been missing a lot of intellectual stimulation lately, and found a great website with lots of interesting articles and opinions. If you want to give your brain a boost after a long House marathon, which I need because that is now my primary form of entertainment, go to Arts & Letters Daily!

Babysitting

Neecy's grandmom needed a babysitter today so I gladly obliged. Isn't my cousin a cutie?

Cranes

One Wish

Two days ago I received two large, light boxes from Hawaii. Not once since I was diagnosed, told I would need surgery, or been sick with chemo, or deep bone pain have I cried. But I did once I realized what the boxes contained.

They two boxes were filled to the brim with paper cranes. 1000 and 1 of them. So many, all made from origami paper, regular paper, magazines, foil, strung together so I could hang them up easily. Bob Bonar, the Head of Development at HPA organized the gift. They were folded by hundreds of people who most likely have only a vague recollection of me from not having seen me for over a decade, or have never met me at all, but were willing to share their aloha and good wishes and hopes that I am going to get better.




Unless you grew up in Hawaii or Japan, the significance might be lost on you. Children my age grew up reading a book called Sadako and the Thousand Paper Cranes. In fact, it was one of the first books I can remember reading in Hawaii at HPA (Kona Campus) in first grade. For some reason, I never forgot it.

It is the true story of a little girl called Sadako who contracted leukemia from the atomic bombs the US dropped on Japan. As she was dying, she became determined to fold 1000 paper cranes, because, according to a Japanese ledgend, she would get one wish if she completed the endeavor, which would allow her to live. In the version I read, she died before completing the cranes.

I think the reason I remember the book so well from my childhood was that it was one the of the first real stories that I read that did not have a happy ending. Not only did she die, but she didn't finish her cranes, and left me to wonder what would have happened if she had. The Japanese Government actually erected a statue in her honor, and says that she did complete the cranes, but as my only exposure is through this story where she didn't, it made me feel very wistful upon remembering it.

I am amazed by the generosity of the gift and the time taken by those who don't know me, and because of that book, it does have deeper meaning that harkens back to my childhood in Hawaii, and the importance of having a goal to focus on while fighting cancer. Mahalo Nui Loa from the bottom of my soul.

Children's Peace Memorial in Japan

One Week

Amazingly, I will have gone a full week without going to the doctor's office tomorrow. This is the first time since I felt the change in my left breast that a full 7 days has gone by without having to take my shirt off for people other than my husband, or being poked, prodded, or stuck by a nurse. I ALMOST feel normal again.

The Cancer Vegan Diet (no animal products, sugar, coffee, booze, or refined grains) so far has been an utter success. I highly recommend it. First of all, it has gotten me cooking again, which I do sporadically but not on an every day basis as my husband is so much better at it than I am. Second, I don't even miss meat, bread, or sugar. What does tempt me is those little jars of candies that are always at doctor's offices, or restaurants, or stores. But as soon as I walk out of the establishment I don't feel like I want it anymore.

The only thing about the vegan diet, although I am EATING all the time, I have lost a pound or two. Which means I need to up the peanut butter and olive oil. Oh, woe is me ;)

Fuzzie Wuzzie!

Yesterday we had a great seafood lunch/dinner at a friend's house. Alberto is from Spain, loves to cook, and makes the most delicious paella ever. I couldn't eat any of it (to be detailed later), but we really enjoyed ourselves!

Afterward, we went to the USA film fest to see a movie called Don McKay with Thomas Haden Church and Elisabeth Shue. The director reminded me of my brother because he was so young and had written the film as well. It just aired at TriBeCa, and I don't think has a distributor yet. I love it when you get to talk with the director and the actors. It is like having an interactive Special Features DVD after the movie!

I shaved my head toward the end of February right after my 3rd chemo treatment because I was shedding like a Persian cat. Although my head was always stubbly and rough afterwards, it never grew at all and unlike my husband, I do not need maintenance shaves to keep the Mr. Clean look.

But now it is growing in a bit, so I have blondish soft peach fuzz all over my noggin. I can't stop touching it! I actually miss my hair quite a bit. I forget sometimes that I don't have any, and I try to stick a pen in my bun or take out my non-existent ponytail before going to bed.

I went to an acupuncturist a friend of mine who also had cancer recommended, mainly to improve my quality of life from the effects of chemo and these horrible hot flashes I am getting from the shutdown of my ovaries. Menopause is going to be awful if this is any preview for it.

Upon his recommendation,I have changed my diet considerably. After hearing from all different people for months, both amateurs and experts in both Western and Eastern medicine that my diet is something that needs a major revamping, I decided to take their advice. Several of them are also people who were Stage IV and now are in remission against all odds.

So, I am becoming what I call a Cancer-Vegan, avoiding any and all products that have been linked to cell cancer cell growth.

Basically, this entails the major tenants of vegan eating (not vegan living, mind you, still love my leather shoes, belts, toothpastes, and all that stuff with animal products in it), and the avoidance of products that are high on the glycemic index, such as white breads, pasta, and potatoes.

Why is a high glycemic index bad? Foods that have a high glycemic index promote the production of insulin, which promotes the growth of some types of cancer. Yes, I know there are studies that are inconclusive. I have looked at evidence on both sides, but you know what, we all know whole grains are better than refined ones, and if there is a chance that it will extend my life, then I prefer to make that bet.

The vegan thing has been quite interesting. It is so easy now to be vegan (Whole Foods everywhere, vegan restaurants), and now that I got it into my head that my high consumption of cheese and meat could be causing this cancer, I don't really have an urge to eat it at all. My brother has been a fish-eating vegetarian for years, although he breaks his diet on holidays like Easter and Christmas, and it isn't that hard.

I got a great cookbook which has provided lots of information for those starting out on the Vegan trail called The Complete Vegan Kitchen. While all the recipes don't apply because I am also shunning any kind of sweets and refined grains, it is great for a vegan beginner.

I have also been learning tons about spelt, millet, and other birdseed that I need to start consuming.I haven't made any recipes yet, but will post them if I deem them worthy.

A New Cocktail!

Since my surgery I have been so busy or exhausted or not in the mood to write, so quite a few things to fill you in on!

Non Medical Update:

My best friend from elementary and middle school from my school in Hawaii, Lexie Lam (now Lexie Cox), came to spend three days with me after my surgery to give my mother a break to go see her parents in Abilene, Texas and to take me to all my appointments and do the things that I couldn't do because my left arm was out of commission. We had a great time and laughed so hard, I am still in a fabulous mood. Nothing like friends visiting to make you forget about the fact that you are just a little lopsided now :) I know many of you have expressed interest in visiting, and I just wanted to reiterate the welcome if you want to come. Just tell me the dates you are thinking about and I will tell you if that works!


I booked a trip to go to back to Hawaii May 23-June 8th (yay!). I haven't seen the men in my family (besides my hubby) since I was diagnosed. Although my father could have come here, he travels horribly and immediately gets sick, which I can't have with a low blood count. This June, my brother and father leaving Hawaii are spending the summer traveling around the pacific in a mega yacht, and of course I can't go and I am totally jealous. So, I will see them in Hawaii before they take off, and I am pumped to see all my friends, go to the Waimea Community Theater, crash my Tahitian class, and paddleboard if my arm will stand it :)

Medical News:

As I posted before, the mastectomy was a success. Anne Brown, sent me a wonderful flower bouquet in the hospital.


Back to Stage IV Cancer - Two Steps Forward, One Step Back

Rather than having chemo on Wednesday, my doctor ordered a needle biopsy of some lymph nodes he could feel in my neck, and of course they came back positive for cancer. Which means I am back to being a Stage 4 Cancer patient. Boo.

I wasn't surprised. What else were they going to be? On the positive side, however, this gives us a baseline, or something to monitor to see how my chemo was working. Had they been negative, the only way for us to monitor the effects of the chemo would be to know it is not working by having a large tumor grow somewhere else in my body. Now, if they get smaller, we know that the chemo is working! I don't have to wait for something to grow in my liver or bones or brain.

My New Cocktail

I had had my first post-surgery chemotherapy treatment yesterday, and as of now (5am the next morning) I am feeling okay:) The Red Devil might not have done much to my cancer, but that kicked my butt way farther in terms of side effects.

Granted, chemo is cumulative and there is usually a delay of a day before you start feeling like crap, but this is feeling pretty good. There are a lot of allergic reactions related to Taxotere and Herceptin, the two drugs I am getting now, so they pump me full of steroids, which explains why I have been up since 2:30am.

If anything saves my life, it is going to be Herceptin. It only became available 6 years ago in the states (and 1 year ago in New Zealand, for all the Kiwis out there). As a memory jogger, my tumor is HER2-neu positive. 25% of breast cancers are in this category, and until this drug became available, it was pretty much a death sentence as it was so aggressive and responded very stubbornly to chemo (as shown by my lack of response to my first chemo cocktail). Even if the cancer disappeared, us HER-2neu postive people relapsed much faster than other patients with breast cancer.

So . . . I am looking forward to see what happens! Thanks again everyone for reading my blog and posting comments. It means a lot to me!