In response to requests for info

Hmm, interesting. I've been getting a couple of comments on my old blog (here) from folks I don't know looking for info.

I have no idea who is still looking for me, but anyway, here's my update:

Marshall and I are now officially divorced, effective 2/21/08. We are friends and get along well. The boys do what's right for them, so custody is fluid.

My health, other than my weight, is fine. Nothing new to report.

I am working as an independent bookkeeper in the Oakland/Berkeley area. I am also a student online working on my undergraduate degree.

My boys are well, my girls are well though far away. I have many blessings. Every time I see my mastectomy scar I remember how cancer created a new and better life for me.

Dense Breast Tissue a Risk Factor

As reported in today's New England Journal of Medicine, a recent study found that dense breast tissue is a risk factor for breast cancer. This confirms what I suspected about my own breast cancer.

I have always had dense breast tissue, and every doctor who examined my breasts throughout the years commented on that fact. When a routine mammogram was done on me at 47, about one year before my cancer diagnosis (and I admit it was the first mammogram I'd had in more than a decade), again I heard that I have dense breasts. Having gotten the 'all clear' sign from both my doctor and the radiologist who read my mammogram helped me put the possibility of breast cancer out of my mind.

After all, I figured, since I'd nursed my last child for a full year and there was no history of breast cancer in my family, not to mention that I was still in my 40s, breast cancer was the last thing I could reasonably worry about. And while I was loathe to do breast exams, my husband was happy to do them for me, after a fashion.

Then there was that day in October of '05 that I found the lump in my breast. It felt to be about as big as a macadamia nut. I'd like to say that this lump was discovered during a search or an intimate moment, but truthfully it was when I was talking at the dinner table and gesticulating, as usual. I put my hand to my chest for effect, and my fingers noticed something amiss.

Panic ensued. Every breast cancer survivor remembers this panic. Words cannot begin to describe it, but I've learned that for mothers it's especially excruciating.

Thank God I'm in a huge HMO (Kaiser Permanente) and my ob-gyn was able to see me right away. He examined my breasts and also felt the lump. Hoping to find fluid which might indicate a benign cyst, he inserted a needle into the mass and drew back on it. I think everything in the world stopped for a moment while I waited to see what substance would fill that syringe. The syringe stayed empty.

Now this doctor had been touching my breasts for 10 years or so. He was the one who sent me for my first and unremarkable mammogram the year before. Nothing was mentioned at any point that my mass might have remained unnoticeable on a mammogram, but my doctor did mention that the size of the mass, if cancerous, indicated it had been growing for a while, maybe years.

Off I went to the mammogram place, and mine showed no mass at all. The technician probably thought she was doing me a favor when she mentioned that the nipple on that same breast was inverted, a 'very bad sign,' said she. I think I was hyperventilating at this point.

At the request of my doctor, I proceeded to the ultrasound room where the mass was finally seen. I was furious, especially after the pathology report came back and I found out the mass was malignant.

How in the world could it be possible, in this day and age, that any sizable mass could be unseen by mammogram, and all over the country and the world women rely on mammograms to determine if they need to be tested for breast cancer!!

Isn't it awfully likely that the mass in my breast was already big enough to be seen on an ultrasound when I had that 'clear' mammogram a year before? If anyone had an inkling that dense breast tissue will hide a mass, they sure didn't mention it to me or any of my doctors.

It seems to me that the study results were so very clear that preliminary results should have been reported to the medical community and the public, allowing women who know they have dense breast tissue to push for routine ultrasounds instead of or in addition to mammograms.

Yes, the likelihood of insurance companies allowing a more expensive test on women who have no other risk factors is nil. Now those same insurance companies need to be directly ordered to pay for such tests if a woman's doctor agrees that the test is a necessary screening tool.

Perhaps breast cancer will kill me. I know now that my odds of living 10 years are not great. If I'd had an ultrasound a year before diagnosis, perhaps my odds would be better.

Cancer patients lose time, study says

A new study from the National Cancer Institute about how much time is spent by cancer patients in getting care and treatment. Only the travel time to and fro plus the actual wait times and treatment hours were included.

What a hoot! Yes, of course we all understand that this sort of medical treatment is very time consuming. And the folks who were studied were only retirees, which makes their time less valuable in terms of dollars and cents. In my case, being a breast cancer patient while being the primary wage earner in a family of 5, the amount of time spent is absolutely staggering!

But the study protocol did NOT include adding up all the time spent resting, praying to God to feel a little bit better by the time dinner is ready. Then there's the time spent being unable to care for yourself let alone others, which leads us to the time spent organizing your own care not to mention the care of others in your household. Arranging rides to and from school for kids can be daunting, considering that most parents who pick up their own children from school treasure that time alone with them.

While I was lucky enough to be collecting state disability payments during the long 10 months I was in treatment, it didn't begin to cover those every day expenses that my paycheck barely covered. So how do cancer patients with no support system in place, either financial, emotional or practical, really manage?

It's pleasing to know that the NCI folks are addressing the issue of lost time. Considering that life is not a dress rehearsal and there are no do-overs, why not expand the study to include all the REST of the time that's lost to cancer. Especially when the cancer patient is a parent. Missed soccer games and school plays . . . the list can go on and on.

Check this out

http://www.healthcentral.com/breast-cancer/

The Reconstruction Question

Recently I read my blog all the way through for the first time. So many times I found myself reading, 'Now THAT's something I'LL never do.'

When faced with the reality of breast reconstruction, my first thought was to agree wholeheartedly that reconstruction was the only possible choice. After all, my belly is big and droopy (it's my biggest part) and I'd been promised that this belly tissue and skin would be used to build me a new tit. When I spoke to close friends and family about it, I had a whole routine which made everyone laugh, something along the lines of, 'I'll get a flat belly and a new rack and I'll be good as new!' Be sure to add lots of gestures when you play this is your head.

Of course all of this was before my diseased breast was actually lopped off from my chest. It turns out that the process of healing went awry, although my surgeon absolutely denied that fact. The drain which was put into my chest after surgery was supposed to stop draining in a few days, at which point it would be removed and I'd be on my way to a complete recovery.

But it continued to drain, and after 2 or 3 infections and one new drain after another, it seemed I had developed a small cavity in my chest which was permanent. As it was explained to me, when fluid fills up inside the chest but outside of any organ, the body eventually naturally encapsulates it. To resolve the healing for me, pure alcohol was injected into the cavity, the alcohol was removed a few hours later, and it left the cavity completely dry so it could close up.

I guess it closed up as expected, but I can still poke myself in that spot and feel the empty cavity. Kinda gross no matter how you think about it.

Radiation followed soon after, and even though I was extremely careful to anoint myself as often as possible with the best stinky Chinese herbal burn ointment, I was left with, among other things, a bad burn on all the skin that was exposed to radiation. It's been 5 months since radiation ended and evidence of the burns remains.

So while I was recovering from the mastectomy I was given a temporary prosthetic garment to wear. It provided no support for the healthy breast, which got to hang down towards my navel more and more, and as I lost the few pounds I'd gained during my treatment I noticed that the stuffed-animal-like prosthesis no longer matched my natural breast. And the irritation of radiation made the garment unwearable. I found myself going without any undergarment, read: flat chest on one side, real breast on the other.

I've been walking around this way for months. Yes, I'm something of an iconoclast, and yes, I was daring people to stare or ask questions or look away, revolted. But then I got over myself and just went about my business every day.

Thinking back to my only meeting with the plastic surgeon, I remember him telling me that he could do the surgery but that I shouldn't really lose any weight. Now I'm 5'5" and 195 lbs., much as I'd like not to be, and I'm working hard to regain good health, flexibility and strength.

Here's how I see the issue: If I want to have a nice new breast fashioned from my belly tissue and skin, then I dare not lose any weight (or gain any, either). If I'd like to lose more weight then I should put off reconstruction to avoid mismatched boobs.

But if I lose the weight I want to and believe I can lose, then there's the possibility that I won't have enough of a belly to use for reconstruction. I promised myself I would not have any foreign objects put in my chest, so if I can't use my own tissue then I won't have a new breast.

If that is, indeed, what will happen, at that point I will look into having a real prosthesis made. My HMO will pay for most of it, but I only get a new one every two years.

I'm quite comfortable now walking around with half a rack. And the bras I'm wearing are compression bras - they hold up my natural breast and simply hold tightly to my skin on the flat side.

Of course there's the question of any intimate activities, and from what I've heard there's more of a chance that I'll be hit by lightning twice on the very day that I win the lottery than a chance I'll find someone who will overlook my itty bitty deformity.

Not much to say about cancer anymore-last post

And I think this might be the right time to stop the blog. I have lots of other things going on in my life, I'm moving forward, exercising, thinking about working, recovering from the burns from radiation . . . all good things.

I am also interested in finding a company that might want to publish my blog or parts of it.

So . . . now the way to find out about what's going on with me is to contact me directly. If you don't have my email address, you can simply post a comment from this blog, and with it send me YOUR contact information. I'm the only one who sees the comments that are sent, so no worries about the entire world having your email address or phone number.

It's been a long run, I thank each one of you who has been faithfully keeping up with me through this medium.

May you only have good health and a long, happy and prosperous life.

Beautiful weather

and my place is breezy and almost cool, which the bright sunshine pours into the rooms.

I go back to yoga on Monday, I simply can't wait!

Have a wonderful Shabbat.