I’m getting rid of my boobs before they get rid of me

March 3rd. A week from today.

That’s the day that my currently healthy boobs will take leave of my body. I’m still in disbelief that I’m about to do this, and I have the urge every day to cancel the upcoming surgery. But I know that logically I’m doing the smartest thing, hard as it is emotionally, and as hard as the surgery will be physically.

I was born with the BRCA2 gene mutation (which I blogged about last year, after I found out about it). Instead of a 3-ish% lifetime chance of getting breast cancer, I was born with about an 80-ish% chance of developing breast cancer in my lifetime. (Think Angelina Jolie, who was also born with a BRCA gene mutation and had a prophylactic mastectomy.)

(Thanks, rosalarian.tumblr.com.)

So far, my mammograms and recent breast MRIs have been clear, but it’s likely just a matter of time before I’d be faced with a breast cancer diagnosis. And if that were the case, I’d have to go through this surgery AND chemo/radiation. No thanks!

I’m 64. That means a few things in regard to my mastectomy situation.

One, I’ve already worked through a big chunk of that 80+% chance of getting breast cancer, so my chance at this point is about 35%. I go back and forth, from thinking that 35% is perfectly tolerable and I should just take the risk, to ‘no way; that’s still a huge chance of breast cancer,’ and back again. Round and round and round. It’s mentally and emotionally exhausting!

Two, I’ll be starting Medicare on November 1st of this year, the month in which I’ll turn 65. I was hoping that Medicare would be optional, but for me, it’s not. On the day that I’m eligible for Medicare, my other coverage is hugely affected. Long story short, I will be starting Medicare on November 1st of this year and MEDICARE WON’T COVER PREVENTATIVE SURGERIES. Nope, they want to wait until you actually get cancer, and only THEN would a mastectomy be covered! Yes, this is insane, but there’s nothing I can do about it.

So my hands (or rather, my boobs) have been forced. If I’m gonna do this, I need to do it now. The reconstruction process involves numerous surgeries, so I need to allow time for all this to happen before I begin Medicare.

There are three basic options after a mastectomy – “going flat,” flap reconstruction (which is harvesting fat from other locations on the body and transferring it to the breast… a very long and complicated microsurgery with a long, complex recovery), and implants. Because of my abdominoplasty thirty years ago to repair damage from my twin pregnancy, I’m not a candidate for the most common (DIEP) flap reconstruction and, although I’ve considered it, I’ve decided not to “go flat.” That leaves “gummy bear” silicone implants. This is the one I explored during my appointment with the plastic surgeon. I kinda like the shape, and the smaller size!

It’ll be months, though, before the gummy will be in my body. Expanders will be placed next week during the mastectomy surgery, and then those will be filled a bit at a time over the next couple of weeks, until I’m at my desired size (smaller). At that point, I’ll undergo an additional (“exchange”) surgery to replace the expanders (which I hear are awful) with the final gummy implants. Fun. (Not.)

Kat’s wedding will take place on May the fourth (of course, Star Wars fans that she and Ian are!) and will be off the grid at Danny’s prospecting claims, where they got engaged (including a very bumpy dirt road – gah!) in California, so we’ll need to work that into the scheduling.

Am I ready? NO. But I don’t know how I ever can really be ready to basically amputate a body part that’s integral to who I am. I’ve chosen to look at it this way: my boobs have nourished four healthy children and have served me well. Now they are trying to (or will likely try to) kill me and they need to go. That’s my logical approach, anyway.

My not-so-logical approach consists of feelings of sadness, loss, and fear.

I’ll let you know how it goes…

Well *that* was fun. Basal-squamous carcinoma excision, graft, and repair.

You know how you hear about those people who notice something odd on their skin and ignore it, waiting months – or even years – to have it looked at by a dermatologist? Well, that wasn’t me.

Until now.

Knowing that I have something called Dysplatic Nevi, I am at my beloved dermatologist at least every six months for a full body mole check. I’ve had lots of resulting biopsies, but never a cancer diagnosis.

Until now.

My last mole check was in May and was I given a happy “all clear, thumbs-up.” A few days after my appointment we went camping and took a few photos.

Do you see anything on my nose?

I don’t. And neither did my dermatologist. Thus the all-clear.

We had quite a few out of town guests this summer, and we went on vacation, so I have a steady stream of photos. Let me know when you notice anything on my nose.

June 6th. Nada.

June 7th. Nope.

June 12th. Hmmmm, maybe a tiny bit of dimpling? Maybe?

June 13th. I don’t see anything. Do you?

June 25th. All I see are freckles.

July 9th. I think I see something. But certainly not enough to concern me. I didn’t give it a second thought – especially because we were on vacation (in the sun, along the Oregon Coast).

July 10th. Yeah, there’s a little nothing of a bump.

July 12th. Yup, there’s a little something there. It didn’t even occur to me for a second that it could be something – and keep in mind that I’m hyper-vigilant!

July 13th. Even with the sun shining right on it, it’s barely noticeable!

July 23rd. AHA!! In those 10 days, the little “pock” started to bleed just a little.

I called the doctor on the morning of July 25th and was seen that morning, due to a fortunate cancellation. I told Dr. Voss that I called it “my little Molakai” because it was sort of a small rolled half circle under my skin. The minute Dr. Voss saw it, she said, “Yeah, this could be something.” And it was!

She took a little cone sample. No big deal at all.

At that point, I fully expected that it was cancer and wasn’t surprised at all when I got a call a few days later to confirm that it was a basal-squamous cell carcinoma. An appointment was made right then to have it excised. Dr. Voss is a cosmetic dermatologist, known for her great surgical and repair abilities.

But I had to go all Dr. Google and decided to opt for a Moh’s procedure followed by plastic surgery instead. Dr. Voss is trained in Moh’s (I learned later) but chooses not to do this method. Although both Moh’s and excision have cure rates in the mid-to-high ninety percent, Moh’s rates are very slightly higher, so I figured I go that route. Due to the nature of the procedure (removing a layer, testing it, removing another layer, testing it, until margins are “clean”), Moh’s potentially takes quite a few hours. Then I’d be put under general anesthesia that afternoon for the repair, done by a partner plastic surgeon.

The consult call with the surgeon was a nightmare! He began the call with “Wouldn't it have been nice if we’d met at Whole Foods, you looking for peanut butter and I looking for jelly…” The he called me “hon” and “babe” repeatedly. I was looking for a good surgeon, not a date! To make things worse, every time I asked a question he was belittling and condescending and treated me like I was some bimbo. (Ya know, every great once in a while I just want to throw the whole “I have a graduate degree, summa cum laude, from Stanford University; you can talk to me as if I understand” thing in people’s faces!) I hung up the phone and dissolved into tears. I did not want that surgeon near me! But I resigned myself to it because by then all the plans were in place.

Two days later I found another suspicious mole and headed back to Dr. Voss, who asked why I’d cancelled the original appointment for the excision. I told her the whole convoluted story – at which point all four eyes were rolling!

Long story short (because the anesthesia is wearing off and I want to lie down), I cancelled the Moh’s and plastic surgery and Julie Voss did the excision today. It was a relatively quick procedure, in which she dug out the cancer (and then some, to be safe) and grafted some skin from near my ear to repair the resulting crater wound. No general anesthesia (but lots and lots of local anesthesia because, you know, I’m a redhead!), Queen and the Stones playing on the radio, and conversation as if we were all having coffee together! It was a perfectly pleasant experience! (Keep in mind, I’m still numb as I write this, so….)

Wanna see photos? OK, take a breath!

Dr. Voss and me, pre-op. She had hoped to do some “flap” procedure, but when she saw the actual size of the cancer – mostly subcutaneous, thus the lack of external signs till very recently -- she decided she’d have to graft instead.

We’ll operate right… here.

I have no idea why it’s covered up!

Maybe to keep it moist while they harvested some skin from near my ear?

Malakai is now a crater!

Ta da! I have a honkin’ bandage on my swollen face, and will for a few weeks, but I’m glad to put all this behind me.

Yes, there is a miniscule chance that she didn’t get all the cancer, in which case she’d need to go back in, but she said she’s confident she got it all. The pathology report should confirm that.

The lesson for you? I’ve been yelling it from the rooftop for years: never ignore anything suspicious on your skin! If in doubt, get it checked! Please. Mine was an “iceberg, not an ice cream cone” -- in other words, mostly under the surface, not above the surface. Can you imagine if I’d ignored it?!

If you’ve been meaning to get that mole checked, please promise me that you’ll make an appointment right…

NOW!!

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

ADDENDUM (September 14, 2016, 15 days since surgery):

Best things first: The cancer is GONE!  The lab result from the surgery indicates “no residual basosquamous cell carcinoma identified.”

PHEW!

Here are a few photos of the healing process. Faces sure heal quickly!

1 day post-surgery: Nice stitch job. Dead-looking graft.

2 days post-surgery: Still no blood supply to the graft.

3 days post-surgery: Look – a blood supply has begun to establish itself!

4 days post-surgery: I puffed up! So swollen!

5 days post-surgery: Less swelling, a bit smoother.

1 week post-surgery: Swelling is gone. Suddenly the wound isn’t so blatantly obvious.

9 days post-surgery. Looking pink… and scabby. No more Band-Aid!

12 days post-surgery. A bit smoother.

13 days post surgery. The scab came off!

15 days post-surgery. A bit scabby again, but I went to a workshop today and no one even mentioned it!

I have an appointment to have a CO2 laser treatment next month, but I’m thinking that I might not even need it – especially since it costs $500 and insurance doesn’t cover it.

I’ll try to remember to post an add-addendum at some point down the road. If I forget and you’re curious, let me know!

Breathing (finally)!

The news is just about the best we could have hoped for:
Tom has early prostate cancer, stage 1, Gleason score 6, very likely confined to the prostate.
When I told Elisabeth, I said, “Well, this is the second best result we could have hoped for.” 
“No,” she insisted.  “If you would have told me that they found absolutely NOTHING, I wouldn’t have believed you… not with a PSA of 49 and a palpable mass!  I would have said to go right back to the doctor and tell him to figure this out!”  That’s our nurse daughter for you!
So it seems that this is the best news we could have hoped for and I can’t even begin to express how relived we are.  I think I’m actually a bit more relieved than Tom because I had done enough research to know that a PSA score of 49 and a palpable mass DOES usually indicate advanced cancer that has spread beyond the prostate.
I asked the doctor today what the deal was with Tom’s astronomically high PSA score and he said that he, too, was baffled since even a raging infection doesn’t normally raise it that high.
And get this: it seems that what brought us into the urologist’s office after two trips to the ER probably wasn’t even related to the cancer!  It was just a fortuitous (it turns out) event that forced Tom to get checked out.  Although he had had a physical 18 months ago with a normal PSA, making an appointment for another physical really wasn’t even on our radar so, had we not been forced into the urologist’s office, we would have never found this cancer at this early stage!  Thank goodness, it turns out, for painful and annoying urinary infections that force you to get to a doctor!
Yes, we have some decisions to make (surgery? radiation? other?) and yes, there will be a new normal that includes a cancer diagnosis. But Tom isn’t going anywhere, thank goodness!  I love that man more than I can ever express in words and I plan to grow very old with him – just as I promised him I would 31 years ago!

In ten days we’ll know if our future will include cancer or if we just dodged the biggest bullet EVER.

Sorry, that’s the shortest post title I can come up with because, since July 4th nothing has been normal, and racing, scary thoughts have been part of that.
My plan was to not say anything on social media until we knew one way or another, but it will be a full month between the first ER visit and the appointment at which we will get biopsy results and I just. can’t. stand. to. keep. it. all. in. any. longer.
I’ll start at the beginning.
On July 4th, six week after we returned from our amazing family trip to Europe, Tom was working on the water feature in the backyard, which had become a work of art as he lay small black pebbles carefully in the grout of the flagstone, creating a beautiful meandering line around the steps and the patio. When he was close to done grouting for the day, he suddenly noticed that he just plain wasn’t feeling well.  He mentioned it to me as he sat on the couch, but he was determined to continue with our plans to watch fireworks from Elisabeth and Danny’s place in Seattle.  They have an amazing view of the Olympic Mountains, the Space Needle, and the entire Puget Sound, and we weren’t about to miss it.  Peeing, Tom said, was painful, and he felt like he was coming down with the flu.
As fireworks lit the Seattle sky, I noticed that Tom was just not himself.  I don’t think anyone else noticed it, but to me it was obvious.  When he didn’t fight my suggestion that we head home and stop at Urgent Care on the way, I knew something was wrong.  Tom had had a bladder infection in 2005 and he had waited too long to get care, so by the time we got him to the doctor that time, his kidneys had been affected.  Once he was on antibiotics, though, things cleared up quickly and within a day or two he was back to normal.  We assumed that he again had a bladder infection and all he needed was antibiotics.
The doctor prescribed antibiotics and pyridium, but 36 hours later Tom only felt worse.  This time I took him to the ER where they took another urine sample (which showed nothing) and prescribed him another, stronger antibiotic.  They also suggested that he see a urologist.  We found a urologist and made an appointment for ten days from the second ER visit.  Elisabeth, our nurse daughter,  implored us to find a urologist who could see him sooner – especially because he was still in pain.  Fortunately we were able to get an appointment just two days later, on July 9th. 
At the urologist appointment, Tom again peed in a cup and again, no infection was found.  The doctor told Tom that he suspected possible prostatitis, an inflammation of the prostate, or possibly BPH (benign prostate hyperplasia), both non-cancerous conditions.  He was baffled, though, as to why the antibiotics didn’t seem to be clearing things up.
I stepped out while the doctor examined Tom and when I came back in, the doctor immediately told us that he felt a “nodule” on Tom’s prostate.  This was of particular concern, especially because Tom’s father had been diagnosed with prostate cancer in his early seventies.  (My father also had it in his seventies.  Our boys need to be extremely vigilant!) The doctor mentioned that he didn’t feel that the nodule was related to the symptoms that brought Tom in, but that he definitely wanted to do a biopsy.
First, though, whatever was causing Tom such discomfort MUST be cleared up, as doing a biopsy on a possibly infected prostate is dangerous.  (His urine apparently showed no infection, but that didn’t mean that his prostate wasn’t infected… at least that was my understanding.)  The doctor sent Tom for a CT scan to check for a possible kidney stone, but no evidence of any kidney stone was found.  He also prescribed a stronger pain killer – which, like the pyridium, had no effect! 
After that appointment Tom slowly, slowly began to feel better.  The flu-like symptoms had disappeared and he was able to pee again.  Hallelujah! 
By the time we visited the urologist again a week later, on July 16th, Tom felt almost back to normal.  The doctor examined him again and, of course, still felt the nodule.  Then he ordered a PSA test.
This was Tom’s seventh PSA test.  He’d had them regularly since 1996 and his score was always well within normal limits (under 4 ng/ml).  His latest PSA, in late November, 2012, was 2.2.  Nice and low.  Completely normal.
On July 16th, Tom’s PSA was 49.  Forty-nine.  A nodule and a PSA of 49. This is scary stuff. 
Elisabeth and I immediately hit the internet – which was about the stupidest thing we could have done. Education is a good thing, but freaking one’s self out really isn’t.  Tom, who was, I think, just trying to digest everything before hitting the internet, was faring far better than I was.  He was upbeat, optimistic, and… breathing.  I was panicking – and in that panic I called his doctor to beg for a biopsy sooner than the scheduled date of July 29th.  The doctor immediately told me that he had seen a very high PSA like this, especially after raging prostatitis, that did not turn out to be cancer. He also told me that he will not do the biopsy any sooner because operating on a prostate that has ANY chance of infection can cause sepsis, a “far more serious immediate risk than your husband is dealing with now.”
So we wait.  Tom has been on a third antibiotic for the past ten days and his biopsy is still scheduled for July 29th, with our “find out results” appointment scheduled for August 5th – a full month after our first trip to the ER.
Our emotions are everywhere, from very hopeful (because all stats come from somewhere; that is, there are always people who beat any odds) to more realistic, knowing that a PSA of 49 usually signifies cancer, and that a change from 2.2 to 49 in 18 short months can signify a very aggressive cancer. 
We believe in positive energy and positive thoughts, so if you could send any our way as we wait, we sure would appreciate it.  Hopefully, hopefully, there will be only one more post here about cancer, and it will be to say that Tom doesn’t have it. 
Let’s focus on that possibility for now…

A good reason to blog regularly again

I just got back from a four-day trip to Southern California to visit my aging mother-in-law.  It was an emotionally exhausting trip that included a diagnosis of Alzheimer’s Disease. 

The official diagnosis came as no real surprise to us, as Nana has shown signs of declining cognitive function for years.  In some ways, having a name for what’s happening even makes it easier, but there’s really nothing easy about a parent (or parent-in-law) “vanishing” in front of one’s eyes.

As I sat with Nana for hours on end, immersed in exactly the same three-minute conversation loop over and over and over again, I found myself wishing that we had access to a permanent and cogent narrative of her memories, her thoughts, and her wishes.  (I was also reading a biographical narrative at the time, so surely that influenced my thoughts.)  Nana has always been a very private person, so there’s no way that would happen for her… but I’ve kept a journal for as long as I could write a sentence and I realize now that this day-to-day, year-to-year collection of my thoughts and experiences is really the most important thing I can leave to my kids and grandkids.

And years of Facebook posts really don’t cut it for this purpose.

So expect to see more of me around here in the future.  I will make this happen!

During my trip to Southern California, the undeniable passage of time was most evident when we drove past the house in Oceanside where my happiest years were spent.  We moved into this brand new house in 1988 when Elisabeth was four, Peter was 18 months, and the twins were still starlight.

In the front yard of each new house was a newly planted tree. 

 

This is what greeted me last weekend:

There’s no denying it: we, too, are headed toward old age (but hopefully not toward Alzheimer’s – though we are newly committed to testing for any signs of early onset!).  As I said often to Nana last week when she acknowledged that her memory isn’t what it used to be and that getting old is no fun, it does “beat the alternative.”

I gravitated repeatedly to scenes like this last week…

…partly because there’s just something so beautiful about a sunset on the horizon. 

But I’ve also come to understand and appreciate (and, yes, fear) a sunset of another sort that is, I hope, many years away.

Tom gets pneumonia, Peter finds a job, and what do I post about…?

Finding Quinn on the couch (a no-no), looking cute, cozy and completely NOT guilty!

These two have become fast friends.  Soon Quinn will be at least as big as --and much redder than -- Shasta!

So you’re wondering about Tom and Peter?  Both deserve their own posts, but it’s been crazy around here, so here’s the Reader’s Digest versions:

Last Wednesday I called Tom at 4:00 to ask if he could pick Kat up at UW.  Not sounding quite himself, he said, “Well, I would, but… I’M IN THE HOSPITAL.”

Excuse me?

Tom hadn’t been feeling well for about a week, during which time we traveled to Idaho to see our nephew graduate from high school and sent him off to the US Air Force Academy…

Then his mother and brother came to Seattle for a visit, during which time Tom coughed a lot and slept whenever possible.  All of us, it seemed, had caught a cold, so Tom encountered some choice words from me about all of us being sick and me needing more participation and help from him. 

Yeah, I do feel sufficiently guilty, knowing that… Well, as I was saying --

“Excuse me?!  Why are you in the hospital?!”

Turns out that Tom had two back-to-back meetings and ran from one in an attempt to get to the other, and then couldn’t catch his breath.  Like, for 30-some minutes, he couldn’t breathe well.  Thinking (shudder!) heart attack, his boss called the Boeing paramedics, who hooked him up to oxygen and brought him to the hospital. 

Mind you, this was at 9:30 AM.  Did anyone call me?  Noooooo.  (Grrrrr!)

He spent the day at the hospital, undergoing a series of tests, trying to determine what was going on.  By 4:00 they still weren’t sure, but did anyone call the wifey to tell her what was going on?  Nooooo!  (Grrrr!)

So I heard about all this when I called Tom to ask him to pick up Kat!  (Grrrr!)

Once pneumonia (of the “walking” variety) was diagnosed, Tom was released and drove himself home and has been recuperating since.  He said he didn’t call me because he didn’t want to worry me and he knew I had a full plate that day.  And plus, he said, he didn’t have any facts to give me, as when I called they were still trying to determine what was going on.  I reminded him that in a marriage, partners need to be at one another’s side during times like this, facts be damned!  I reminded him that I SO would have called him when I was in the ambulance on the way to the hospital, asking him to drop everything and be with me.  Because I guess I’m selfish and needy like that.  I made him promise that he would never wait to call me in a situation like that again. 

He knew there was only one answer to that: “Yes dear.”

And Peter!  Yes, Peter found a job!  Get this: he had an interview at this environmental consulting firm in Yakima (yes, Yakima) on a Friday and they asked him to return for a second interview the next Friday afternoon, at which time they offered him the job and asked whether he’d be willing to start ON MONDAY if they put him up in a hotel.  There’s really only one answer to that question in that situation.  So last Sunday night Peter drove to Yakima with just some business clothes, checked into a hotel, and started work on Monday morning!  He was thrown head first into an intense, demanding, and challenging job which he will ROCK at!  On his few off-hours he looked for a place to live and, fingers crossed, it looks like he’ll move into his apartment this coming Tuesday.  Talk about zero to a hundred in five seconds…!

He’s been sleeping most of the weekend except for a quick trip to Ikea to get some furniture for his new place.  The poor guy is beyond exhausted – physically and mentally.

And Kat has found a house in Seattle that she’ll share with two other women next year, her senior year at UW.  (How did that happen?!)  She can move in next Friday, so next weekend we’ll rent a trailer on Friday afternoon, bringing all Kat’s furniture and belongings to her new house that night… and then Saturday morning we’ll load up the same trailer with Peter’s furniture and belongings, drive out to Yakima, and help him move in.  Crazy busy – and even busier because Tom isn’t allowed to exert himself much! 

I am, um, woman… hear me, um, roar?