I'm A Mutant

Voice Mail

A glimpse into life as a mutant:

Last week I went to my new doctor for my semi-annual ovarian inspection.  Part of this process involves a CA-125 blood test which supposedly detects a tumor marker for ovarian cancer.  In other words, if your blood level of this particular substance is elevated, it may be an indication of the presence of ovarian cancer.  The test is highly unreliable and prone to many "false positives" (i.e., someone's number can be elevated when they don't in fact have ovarian cancer) so I have been repeatedly warned not to freak out if it elevates but also not to get any false sense of security if it's normal.  Nevertheless, even though the test is highly imperfect, doctors still use it on mutants based on the theory that "something is better than nothing".   

Anyhow, on Friday morning my cell phone showed a missed call and voice mail from Dr. LGR's office.  In my past experience doctors never called me with test results unless they were abnormal.  With the space of the ten seconds that it took to dial into my voice mail, the entire scenario flashed before my eyes: elevated CA-125 level, ct scan, tumor, surgery, chemotherapy, crying, Last Will and Testament, death, three little motherless orphans. 

Then the voice mail:  "Hi, Dee, this is E, Dr. _________'s physician assistant. I'm just calling to tell you that your CA-125 test results were normal.  The number was 3.2.  Anything less than 35 is considered normal.  Please give me a call back if you have questions.  Bye." 

I nearly collapsed in relief. 

Nearly.

Collapsed. 

We Can't Go On Like This

I am happy to report that I have a new doctor and I like her very much.  I shall refer to her as Dr. Let's-Get-Real and I do mean that as a compliment.  Since we're coming up on six months since my last ovarian inspection it was time for me to go in for an ultrasound and CA-125 blood test, the typical maintenance routine for mutants that still have ovaries.  I was supposed to see Dr. Statistics at Cancer-R-Us but I had a business trip that conflicted with my appointment and I couldn't get out of it.  When I called his office to reschedule, I was told that he wouldn't be able to see me until early February.  When I explained that this wasn't going to work because I would still be recovering from my mastectomy, I was told that the next available appointment after that was early March.  When I complained that a mutant like me is really not supposed to go for such a long period of time without an ovarian inspection, I was told that Dr. Statistics only sees patients one day a week so it was basically my problem.  At which point, it dawned on me that I am not only a patient and a mutant but I am also a consumer with excellent health insurance.  There are many cancer centers and famous "BRCA" docs in this city so there was no reason for me not to vote with my feet. 

So I called one of the competitors of Cancers-R-Us and I got hooked up with a lady doc who is very well spoken of on the FORCE message boards.  I was able to get in to see her last week. 

The rival cancer center is a full service cancer center too but it is much smaller and grittier than CRU.  I guess I'll just call it the Cancer Bodega.  The first thing that I noticed in the waiting room was that there was a surfeit of young women waiting to see Dr. LGR.  They looked pretty healthy so I was wondering what they were all doing there since Dr. LGR specializes in the treatment of ovarian cancer.  It was then that I remembered that the receptionist at the CB mentioned that they do the "surveillance" there one day a month.  I was in a room filled with my fellow mutants!

Anyway, the CB is not an especially well run operation.  The typical visit for "ovarian surveillance" consists of an ultrasound, a CA-125 blood test and a physical exam.  I got through it all but it took over three hours! 

Despite the aggravation of waiting for hours wearing little more than a vile green smock, I liked Dr. LGR just fine.  She's a warm and open person, easy to get to know, direct.   I can't say that in substance she told me anything different from what Dr. Statistics at CRU told me but it was her demeanor that made all the difference.  I felt that she actually had some interest in listening to me, getting to know me, letting me direct the conversation, rather than setting the agenda.  And she didn't hide behind her white coat - on the subject of oophorectomy she acknowledged that the idea of removing healthy organs to prevent cancer is "crazy" (her choice of words) but she also said "but ovarian cancer is worse and I hate ovarian cancer more."  She admitted that she wished that she had something better to offer me and that she wholeheartedly believed that there would be something better for the next generation of women who have to face this down because "we can't go on like this". 

Perhaps I've just been waiting for one doctor with enough clarity to not mistake the lesser of two evils for something inherently good.

No, we can't go on like this.   

Foob Inspection

I finally got a chance to visit my friend, M, on Monday night.  M had a double mastectomy for DCIS last week.  She has expanders and she will probably have her final implants put in sometime in February.  I am having a different type of reconstruction so my recovery may be very different but I was heartened to see that just six days after her surgery she was up and around, completely taking care of herself and in great spirits.   Her upper body was a bit stiff and she couldn't really lift her arms much but she did not appear to be in much pain.  She said that throughout the process her pain was very well managed, first by a self-administer morphine pump in the hospital and then with prescription drugs at home.  She was also sent home with a different type of pump that provided local anesthesia to the area for the first few days.  

She also showed me the "foobs".  Since they are still under construction, the projection is quite small, but the shape is definitely there and they look pretty and round.  And "nipple sparing" is a minor miracle - she kept her nipples and the presence of nature-made nipples really fools the eye into believing that you're looking at real breasts.  The incision from the nipple to the armpit is surprisingly small.

She is very relieved to have the worst behind her. 

I hope that I feel the same way when all is said and done.  

Grace Period?

Oh shit!  I missed my very last NaBloPoMo post by an hour!  Fuck, fuck, fuck. But I have a good excuse!  I went out of town to visit my friend who had her double-mast last week.  I just got home.  I have lots to report but for now I'm signing off on this "post a day"  crap and declaring mission accomplished!

Blowing Smoke

Suppose I told you that I had a wonderful new device for your home: it's called a smoke detector.

"What does it do?" you ask me.

"Well, in the event that there's a fire in your house, it will ring loudly, alerting you to the fire in time for you to get out."

"Wow. That sounds great," you say. "But is there any chance that it won't ring even if there is a fire?"

"Well, yes, if we're being honest, even if you install one of these gizmos in every room in your house and chance the batteries regularly, there's still a chance that it won't ring in
time for you to get out of the house."

"How much of a chance?" you ask, eying me warily.

"Well, in five out of six big fires, you'll end up dead anyway.  But that's besides the point!  If you use this mammogram smoke detector it could very well save your life! I mean sure, five out of six fires will be fatal anyway but what if you're the ONE????  I mean even though it's extremely unlikely that you'll actually have a fire (unless you come from an especially flammable family), you need to be worrying about fire all the time!  I mean we're talking about FIRE here."  

Last week, the New York Times published an article trying to explain the science behind the new mammogram guidelines. 

That means, they said, that 1,900 women ages 40 to 50 must be screened to prevent one death from breast cancer up to 20 years later. At the same time, even with the screening, five deaths would have occurred anyway, probably because many of those cancers grew so fast that no matter how early they were found it was impossible to cure the women. So in the end, 1 out of 6 deaths would have been prevented. [Emphasis
added.]

In the wake of the controversy surrounding the new guidelines, a simple fact is consistently and willfully ignored:  As a detection device, mammograms suck. 

Women in their 40s DO get breast cancer.  But the thing is - mammograms do a really shitty job of saving them.  Mammography is an overhyped technology that has not delivered on its promises.

So why is so much time and energy spent on defending a practice that represents one of the biggest medical con jobs ever perpetuated on American women?

Perhaps if some of the angry comments on the New York Times website said things like "I went for my annual mammograms and my cancer was detected 'early' and I ended up dead anyway" we might get over our love affair with mammograms. 

Over and Out

Toddler has learned how to successfully extricate self from crib without need of ropes, grappling hooks and crampons. 

Amazing how much wall traction you can get just with footie pajamas. 

Ladies Who Lunch

Things are accelerating.  Since I was off work today I thought it would be a good day to have the "talk" with my sixteen year old daughter.   I realized that a canned speech wasn't going to work.  I had to be prepared to improvise.    

Lunch at a good French bistro.  Just the two of us.  A set-up that says "I'm taking you in my confidence because I know that you're mature enough to handle what I'm about to tell you." 

But to be candid, all of my careful mood setting was unnecessary.  My daughter was sympathetic to my plight, concerned about my welfare, but utterly unfazed regarding any implications that my condition has for her own long term health.  Amidst all of my dithering over "how to tell the children", I had overlooked one key aspect of the teen-aged mind:  Like most teenagers, she still believes in her own immortality, that death and cancer are things that happen to old people.   Like really old people.   Like people over the age of thirty-five.  And since she can't imagine ever growing old, it doesn't seem like something worth worrying about any more than she would worry about getting hit by a bus.

In summary, I told her that I would be going away with Boy Toy for two weeks in January, that I would be having a mastectomy and reconstruction, that this was necessary because I had a "precancerous" condition that made me extremely vulnerable to breast cancer.  (A tiny bit of obfuscation there but not a total lie either.)   She did indeed ask if she could have inherited this "precancerous condition" from me and I said "possibly, but that isn't something that you need to worry about for many, many years."    The rest of her questions were about logistics and what exactly is going to be done to me.  No further questions regarding the genetics so no further information was offered.

And the good news for her is that she gets to spend two weeks at Grandma J's house. 

Grandma J is total pushover.  

   

Basted

Too drunk and tired to blog.  Happy Thanksgiving and good night!

Just Desserts

I have lots of ideas percolating and I've been diligently editing scraps of assorted rants.  But Thanksgiving is one of my favorite holidays so I've decided to give my usual misanthropy a rest. 

Tonight I will only be working of perfecting my pumpkin-praline cheesecake (don't make that "eww pumpkin" face - it's delicious!) and tomorrow I will put the finishing touches on my sour-cherry pie.  Desserts are my thing.   

Seeing Is Believing

My friend had her double-mastectomy today.  She suggested that I come visit her in the hospital tomorrow.  Her family is out of town so I feel that I really ought to go.   And she has been a good friend to me.  So I really want to go.

But I'm a bit terrified.  I've only been able to keep my freak-out at bay because I can compartmentalize and force myself to concentrate on other things. 

But if I am confronted with reality  . . . I can't predict how I'll react.

I'm such a chicken-shit. .  .