Sandbox Revisited

"Finish every day and be done with it. You have done what you could. Some blunders and absurdities no doubt crept in; forget them as soon as you can. Tomorrow is a new day; begin it well and serenely and with too high a spirit to be cumbered with your old nonsense. This day is all that is good and fair. It is too dear, with its hopes and invitations, to waste a moment on the yesterdays." ~ Ralph Waldo Emerson

Thirty minutes of intense pedaling on the stationery bike relieved me of all my fury last night. My legs are still tired this morning, but my mind is calm. I emailed a note to Dr. Cristofanilli's scheduler to see if I could manage to work in a trip to the lab next Tuesday (nipple day revisited). I conceded that I might not be able to see Lisa (his nurse practitioner) that day, but we can always discuss the report via telephone. (Usually one sees the doctor/PA/ nurse the same day as the tests.) Though it's highly unlikely that anything unusual will turn up, not checking makes me crazy and scared.

Dr. Sandbox gave me a little lecture about the limits of technology and how, even if there were some early signs of cancer, a blood test might not be subtle and sophisticated enough to spot it this early. True enough. No question about it. It's not "predictive," he pointed out. There is another reason to take a look at what's going on, though. It's important to have a clear idea of whether the level of Tamoxifen is adequate. I'm not as clueless as he seems to believe. Furthermore, if the National Cancer Institute recommends it, shouldn't we do it if only to ease my troubled mind?

Sandbox reminds me of why I used to hate doctors, specifically male doctors. It's the arrogance, the utter lack of interest in the patient's questions and concerns. Yes, you've been to medical school, but so has my ex sister-in-law. Believe me, I'm not that impressed. I, on the other hand, have lived in this body 54 years now. I'd like to live in it another 20 years or so, long enough to take up smoking again. (I've promised myself that, if I make it to 70 or 72 depending on my mood at the moment, I can throw all caution to the wind. Thank you, Frank Sinatra, for the inspiration). Sandbox and all of his ilk should listen more and talk less.

I was momentarily called away from my relentless Sandbox bashing to do a little freelance computer assistance for my friend the Superhighway. What blind faith they have in me. Fortunately, she had a question I could answer and I even remembered the exact process without fumbling around the way I do most of the time. I always find my way eventually, but I hate making my faithful friends wait while I noodle around endlessly.

I've belabored Sandbox enough, anyway.

It's a cold, gray, rainy start to the weekend. I had to go downstairs a little while ago to fetch my yogurt from the refrigerator. The atrium is always chilly, so I ran upstairs. The wooden stairs creaked mightily as I did my best to sprint. As a matter of fact, it sounded to me like the entire building shook. I'm reminded of the proverbial herd of buffalo. Can I blame this on the boots? Wait. Maybe Sandbox is somehow responsible.

No Blood Work

Warning: Ggirl is furious. Bad language will be used. If this offends you, move on to another post.

I just got back from seeing Dr. Sandbox. He is now being called by that name because he is one of the most narcissistic people I have ever met. And that's saying a lot. My dad pretty much had the market cornered on that quality.

He entered the examining room and I said, "Hi, Dr. Sandbox. How are you?" I'm a southern girl. I have southern manners. We always ask.

"I'm here," he says.

Oh really. Well I'm fucking fine, too, asshole. I'm thrilled to be here. At least you're getting paid.

He makes me take my clothes off and pokes around on my breasts. It's not like I don't have millions of guys doing that. Seriously. I do not need my oncologist to feel. It is a massive waste of my time and it makes me cold sitting on that stupid table.

"Are we doing blood work today?" I ask.

He launches into a lecture about how blood work doesn't really tell you anything. Again, oh really? Then why does the National Cancer Institute recommend one every six months. Am I at six months? Hell yes.

So we did not do blood work. That scares me. If we're not doing blood work, then I'm wasting my time. Seriously. There is absolutely no reason for me to be there if all he's going to do is poke around on my breasts. Even I do that. An extra pair of hands is NOT NECESSARY.

Then I broach the question, once again of BRCA1 and BRCA2. I noted that the last time I saw him, he thought I should do one. He said that after I mentioned it, though. So.

"If you think I should have the test, then I'll have one. Don't do it because you're humoring me, though. I don't have any vested interest in having one, but if you think that's what I should do, then I'll do it."

Again another lecture that has little bearing on the issue at hand. Finally he said he thought we should pursue it. Okay. So we're doing genetic testing but we are not doing blood work. This makes complete sense to me.

BRCA1 and BRCA2 are indicators of whether it's likely breast cancer will develop in the other breast and whether it seems likely ovarian cancer is a risk. Fine. We'll test, but I am NOT having anything cut off. I am not having ovaries removed. I am sick to death of surgery.

On the other hand, I don't want to wake up two years from now and find out I need to do more chemo. (Again, another important reason for BLOOD WORK.) I will not do chemo. I don't care what that means. I WILL NOT DO MORE CHEMO.

So here's tomorrow's agenda. I will call M.D. Anderson and see if I can schedule and appointment with my oncologist's nurse practitioner and see if she will do blood work. Then I will cease the procrastination and find a local oncologist I don't hate.

Dr. Sandbox. What an asshole.

Blood Work Day

It's time for more blood work (I've really started to love the sound of that), so I'm seeing my oncologist today. I can't stand that guy, but what with the rescheduling of the rescheduled scheduled nipple reconstruction, I haven't gotten around to finding a new one. Okay. It was also because I always, always avoid thinking about breast cancer, if at all possible. So I've procrastinated.

Before I was diagnosed, I never procrastinated. It's not a thing that comes naturally to me and it used to make me anxious. In the past two years, I have become a pro. I am a world class procrastinator. Make a hotel reservation in Houston? I wait until the week before the appointment, even if the Houston Live Stock Show and Rodeo are imminent. Talk with M.D. Anderson about changing physician notification? I've been "meaning" to do it for about six months now. That, my friends, is an accomplishment. I find I've topped myself. Not locating a palatable oncologist wins me the gold (thanks, Mitt) in the Olympic Procrastination event.

I've been coping with my anxiety by being giddy all day. I've been a source of great amusement to all of the denizens of Crazy Land. They wish I could have Oncology Day every day. Hilarity abounds. We had a birthday celebration today and I was absolutely manic. Not to take credit or anything, but I laughed at everyone's jokes, encouraged their camaraderie and spread love as if it were high grade margarine. It was a remarkably festive event. Oh for the days of Little Miss Sunshine, when I was willing to put in that kind of effort every day.

Yesterday, Crazy Employee and I rescued a couple of puppies from our next door neighbor. Lillian has allowed her two dogs to repopulate the entire neighborhood and she's been doing a mighty fine job of reproducing herself. Luckily, other people rescue her human offspring. The puppies and I had an immediate Love Connection the likes of which even Chuck Woolery would be impressed.

I'd love to share with you why I'm so exhausted. I've started keeping track of my physical fitness work every day. Yesterday, after reviewing all the work I've done in the past three days, it was clear to me why I drag myself out of bed every morning feeling like I've been run over.

I've had a dream two nights in a row. I've just started the new year in high school, have been assigned a homeroom and a locker. I've also been assigned the topic for my senior honors English class thesis. It's O'Henry...I think. I get sick after the first day of school and I'm absent a long time. When I go back, I'm anxious about finding my homeroom again. The worst part is that I can't remember if it's actually O'Henry who's supposed to be the subject of this enormous project. I frantically try to write a paper in an hour that was supposed to take all semester. While I'm writing it, though, I'm thinking, "Why O'Henry? I hate O'Henry. Surely that can't be right." I wake up drenched in sweat.

I may be the only person I've ever known who's found herself terrified by thought of William Sydney Porter.

BRCA Breast Cancer Gene Risk Varies

From WebMD:

Odds of Breast Cancer Vary for Relatives of Breast Cancer Patients With BRCA1 and BRCA2 Gene Mutations

By Miranda Hitti

WebMD Medical News

Reviewed by Louise Chang, MD

Jan. 8, 2008 -- Scientists have some new clues about breast cancer risk among the sisters, daughters, and mothers ofsome breast cancer patients.

Those clues center on the BRCA1 and BRCA2 gene mutations, which make breast cancer and ovarian cancer more likely.

In a new study, nearly 1,400 women diagnosed with breast cancer before age 55 got BRCA1 and BRCA2 genetic tests. They were also asked if their mother, daughters, or sisters had ever been diagnosed with breast cancer.

The vast majority of the breast cancer patients had no BRCA1 or BRCA2 gene mutations.

But 5% of the patients who had had breast cancer in one breast and 15% of those who had had breast cancer in both breasts had BRCA1 or BRCA2 gene mutations. Their close female relatives were more likely to have had breast cancer than the relatives of patients without BRCA1 or BRCA2 gene mutations.

Age also mattered. Younger breast cancer patients were more likely to have a mother, daughter, or sister with a history of breast cancer.

Besides BRCA1 and BRCA2, other genes likely "play a major role" in the study's breast cancer risk variation, and environmental and lifestyle factors may also have been involved, write the researchers.

They included Colin Begg, PhD, of New York's Memorial Sloan-Kettering Cancer Center. Their study appears in the Jan. 9/16 issue of The Journal of the American Medical Association.

Infinite Varieties of Pain

When the Physician's Assistant, Jennifer, came into the examining room, I immediately sensed that something was amiss. She asked several times, "Why didn't I know you were here?" Well, that's hardly a question to ask me. I didn't know. She asked me if I was having any problems or wanted to pursue any revisions to the reconstruction. There is one place under my arm that's still hideous, so I mentioned that, even though I couldn't see that the conversation had much relevance to the reason we were there. Jennifer told me that all revisions must be completed before the nipple construction. Somewhere along the way, I noted that the nipple was my whole raison d'etre for being there. Uh oh.

Gwen, the lady who made my appointment stuck her head in to verify that I'd originally been scheduled for last Thursday. "That's absolutely right. That's what I thought." I was puzzled that they thought there was any way I'd be confused about when to show up.

Dr. Kroniwitz finally arrived to tell me that he doesn't do procedures on Tuesday. Gwen (who is generally excellent at her job) scheduled me for the wrong day. Dr. Kronowitz was embarrassed and clearly felt terrible about the expense and inconvenience. He personally went to reschedule my appointment for January 29. He offered to see me next week, but I couldn't do it. I needed a break before the trip, a break from the stress.

"Well, we have to do something, Dr. Kronowitz," I told him. Otherwise my supplemental insurance wouldn't reimburse me for any of the travel and hotel expenses.

"Okay. Let's do some injections," he suggested.

I was cheered up and agreed immediately; he was awed by my enthusiasm. I waited, flat on my back on the exam table for about 15 minutes; it was beginning to hurt by then. Eventually, they arrived to perform the steroid injections on various chelated scars. We did my reconstructed breast. No problem, except for a huge scar underneath the breast. It's not numb and, though the steroids are mixed with lidocaine, the anesthetic didn't have time to prevent pain as he stabbed me several times with the needle. Jennifer commented that the needle was larger than she expected. Then the real fun began.

He began a series of injections in the scars across my lower abdomen. I am not numb there, either. He also injected the two scars on my pelvis where the drains were inserted. Nope, not numb.

I think one of the biggest revelations of my breast cancer journey is the discovery that there are a lot of different kinds of pain. I had no idea pain could take so many forms. (I'm certain that I still haven't experienced all of them.) There's surgery pain and chemo pain (which in itself involves several previously unknown types of physical suffering), there's pain from needles inserted into my breast, pain from having massive amounts of skin and tissue moved from one place to the other. I've also experienced unspeakable psychological pain from simply trying to withstand the process and, after my tram flap, from being dependent on other people to move me from one place to another. Steroid injections into the abdomen and pelvis definitely provided me with yet another novel form of pain.

The steroids are systemic and the revved up feeling reminded me of the way I used to feel the day after chemo. A chilling memory.

There is yet another surgery coming, but I deferred it for six months. I have officially hit the wall. I don't have the mental strength to undergo another surgery any time soon. It took several days to steel myself for the nipple reconstruction. As I sat in the living room on Sunday (the day before I left town), I knew that I've reached the end of my psychological rope. The warrior spirit has been completely depleted.

For the next week and a half, I'll be trying to mentally prepare myself for another round of stress, another visit to a previously unknown type of pain. I can do this. Yes I can.

Scientists Discover How BRCA1 Gene Causes Cancer

From Breastcancer.org

What breastcancer.org says about this article

The study reviewed here seems to have figured out how abnormal BRCA1 genes (BReast CAncer gene 1) lead to breast cancer. When BRCA1 genes are healthy, they fix DNA breaks (protein strands that make up chromosomes and genes). When BRCA1 genes are abnormal, they can't fix DNA breaks, specifically breaks in a gene called PTEN. PTEN genes stop cancer tumors from growing. If a PTEN gene has a DNA break that isn't repaired, cancer cells have nothing to stop them and grow rapidly.

DNA breaks happen all the time as cells in the human body grow and multiply. In most cases, the cells realize a mistake has happened and fix the problem. But if a "fixer" gene such as BRCA1 is abnormal, there is no way for the cells to fix the mistake. As researchers have learned more about the role of specific genes and proteins, they have developed a group of medicines called targeted therapies that tell genes and proteins to do specific things to stop cancer growth. Herceptin, Tykerb, and Avastin are all targeted therapies.

The results of this study may help researchers develop new targeted therapies to repair breaks in the PTEN gene. This could help women diagnosed with what's called triple-negative breast cancer (estrogen-, progesterone-, and HER2-negative). Right now, this type of breast cancer has limited treatment options because current hormonal and targeted therapies don't work.

According to statistics from the National Cancer Institute (NCI), about 15% of all breast cancers are triple negative. Young African American women are more likely than women of other ethnicities/races to be diagnosed with triple-negative breast cancer.

Stay tuned to breastcancer.org for the very latest news on research that may lead to new breast cancer treatments.

Last Updated: 2007-12-11 11:17:09 -0400 (Reuters Health)

By Julie Steenhuysen

CHICAGO (Reuters) - Mutations in the BRCA1 breast cancer gene appear to be linked with the loss of a protein important for putting the brakes on cell growth, a finding that could lead to new therapies, researchers said on Sunday.

The breakthrough could lead to more effective therapies for women with an aggressive and especially deadly cancer known as triple-negative that does not respond to current advanced drugs, the researchers said.

"It doesn't have a good target for therapy at this point," said Dr. Ramon Parsons of Columbia University Medical Center in New York, who worked on the study.

Scientists have known for more than a decade that women with certain alterations in the BRCA1 gene were at high risk for breast cancer. What they have not understood is exactly how a mutation in this gene leads to cancer.

Researchers at Columbia, working with at team at Sweden's Lund University, now believe mutations in the BRCA1 gene can leave cells incapable of repairing routine DNA damage. When such damage occurs in a protein called PTEN, which regulates the growth of cells, cell growth is unchecked and tumors form.

Women with faulty copies of BRCA1 or BRCA2 have a 50 to 85 percent chance of getting breast cancer. Mutations in these genes account for 5 to 10 percent of breast cancer cases.

Most breast tumors are called estrogen-receptor positive, because they are fuelled by the hormone estrogen. About 20 percent are HER2-positive, because a protein called HER2 is involved. A third type is driven by the hormone progesterone.

These types of cancer have good treatments.

Then there are basal-like or triple-negative tumors, so named because they lack estrogen, progesterone or HER2 receptors needed for most breast cancer drugs to work.

UNCHECKED GROWTH

"The basic idea is that BRCA1 is a repair enzyme that is involved in coordinating the repair of double strand DNA breaks," said Parsons said in a telephone interview.

"When it is mutated, it is no longer present in a cell. If a cut occurs in PTEN, there is no way for this cell to fix it," said Parsons, whose study was published in Nature Genetics.

"It is like cutting the brake cable on a car," he said. "If PTEN is broken, you turn on a pathway that tells the cell to grow. It tells the cell to start dividing. It tells the cell, 'don't die.'"

Parsons said loss of the protein PTEN is how breast cancer gets started in women who have inherited the BRCA1 gene mutation.

His team made the connection between BRCA1 and PTEN by searching for chromosome breaks within the PTEN gene.

They scanned 34 biopsies taken from women with BRCA1 tumors. The PTEN gene had been split in two, but inadequately repaired in about one-third of the cancers. In some cases, entire sections of the gene were missing.

They said these chromosomal mistakes trace back to the tumor's lack of BRCA1, which is charged with cell repair. He estimates that about 50 percent of BRCA1 breast cancers harbor mutated PTEN.

"These tumors have very high frequency loss of the PTEN protein," Parsons said. In breast cancers from women with normal BRCA1, they rarely found large mutations in PTEN.

"A lot of drug companies are working on this. There is reasonably good hope that this approach will improve therapy for patients," Parsons said.

Basal-like breast tumors are also found in 10 to 20 percent of women whose cancer was not caused by BRCA1 or another gene. The researchers found PTEN is lost in most of these breast tumors as well.

New Nipple ETA

Nipple reconstruction was postponed and I'd actually cheered up, thinking that we might not be able to reschedule it for a month or so. The nurse called me a minute ago to advise me of my new date, next Tuesday. She also advised me regarding what I can expect pre- and post-procedure. It does not sound good. More not bathing, more huge dressings. Great.

Prior to the cancellation of this week's scheduled nipple work, the Inner Fascist had a return engagement to help me cope with my anxiety. It appears that, when distraction finally fails me, self recrimination steps in to take up the slack. I noticed the Fascist voice very quickly this time and told her to stop. Loudly. Once was not enough, but at least I heard the inner taunting relatively soon after it started. Having made the connection between anxiety and the IF while I was in the midst of making myself feel bad was a big step forward. I'll have more time to practice by late Saturday afternoon, I'm sure. By then, distraction will have lost its power to disguise my anxiety.

Screaming Physical Therapy

I'm just back from physical therapy, feeling like screaming. It happens every time. Massaging scars and pushing my muscular/flexibility limits is very painful.

The up side? My PT says I can cut back to once a week because I consistently work every day at home. She says I'm making progress and I try be content with the small gains I've made so far.

The other wonderful news is that she thinks I have good posture, something I've been trying to mindful of as I go through my day. I got accustomed to slumping a bit after the reconstruction surgery. Time to stand up straight, which helps with energy and stretches out those internal scars where the tubes ran vertically inside my body from both sides of my groin to new breast.

The very best news (and I know this sounds a little silly) is that PT says I have perfect crunch form. The former fitness addict (and perfectionist) in me rejoices at that news. Muscle memory. It's an amazing thing.

It's been a good Friday so far. Well, except for that need to scream.

Next week, I'll report on the saga of the latest injured employee who's driving me crazy.

New Nipple Arrives January 10

The pie making season is officially over and what a blessing that is. The first (Thanksgiving) pie was fabulous, but the Christmas pie disappointed. I haven't been interested in baking in many years, so I'm a little puzzled by my enthusiasm for it this year. The oven can now take a well-deserved rest until Easter.

Nipple reconstruction is scheduled for January 10. It's an out patient procedure, using a local anesthetic. I know they will tattoo the aureole to match the other girl. When I first read about that technique, after I had tattoos for radiation, I was anxious about having it done. I didn't know then that the new girl would be completely numb.

As for the nipple itself, that tissue sometimes comes from the inner thigh area, sometimes from the labia. Either way, it doesn't sound like much fun to me. On the other hand, there's nothing they could do to me that would hurt worse than the things they've already done to me. I try not to think about it. Ignorance is bliss.

My physical therapist is impressed with the progress I've made in muscle strength and flexibility. I've been doing the exercises she gave me as homework and I changed my yoga routine to include more stretching in the tummy area. The goal is to tear the scar tissue under my skin. Yes, as a matter of fact, that does hurt. It all hurts.

My mom convinced me to stop riding my bike because of my constant fatigue. That's a typical problem for someone who's had chemo, radiation and multiple surgeries. Fatigue plagues many people for years after their treatment. I go to bed exhausted and I wake up exhausted. As a matter of fact, I started falling asleep on the sofa at 3:00 p.m. yesterday and kept drifting off all evening. Once I fell asleep in the middle of one of Hubby's sentences. I tried to pretend that I hadn't, but I failed to respond appropriately to his comment, so I'd be surprised if he didn't notice.

My physical therapist encouraged me to get back into my bike routine and to integrate some other types of cardio exercise into my daily workouts. I have many dance aerobic dvd's and the thought of being able to do them again makes me happy. I may try one of them today and see how it goes. I'm certain I won't be able to make it all the way through the workout the first time, but maybe soon.

Meanwhile, my weight is still an issue. I've been on an eating rampage during the holidays, but I still haven't gained any weight. That's good and bad, you know. It's bad because all of my clothes hang on me. It's good because I'm always balancing precariously on the edge of an eating disorder and thinner always means better to me. Even when it isn't better. My (psychological) therapist suggested that I think of gaining weight as a means to building strength. I'm good with that and heaven knows I've been the festal sausage for over a month now. When I weigh myself (infrequently), the numbers never change.

I hope the coming year is a lot less painful than the past two. I hope I regain some of my lost stamina. I hope I find sources of greater joy. I hope the next pie I make is better than the last.