Indeterminate

I finally made contact with the doctor only to learn that the biopsy "didn't get much in terms of thyroid cells," so while the cells didn't show cancer, they weren't the right cells. According to the endocrinologist, they provided "no useful information."

So we could try again but because the mass is a "complex, heterogeneous" one (meaning it has several different types of cells in it), there's no guarantee that the next needle biopsy would provide any meaningful data either. And because even with a clean biopsy, the large size of the mass (4 centimeters and no chance of getting any smaller) makes it something she'd recommend having removed anyway, the doctor thinks it needs to come out and biopsy it then. It would be a right lobectomy only and if the biopsy came back malignant, they'd have to do another surgery to remove the left side. That's the downside to this plan--having to have two surgeries, which the doctor described as "inconvenient." But because I'm in the lower risk group for thyroid cancer (neither young nor old, female rather than male) she said surgery was the "reasonable way to go."

One lobe can usually compensate and make enough thyroid hormone for the whole but they'll check--starting at about three weeks after the surgery--to make sure I don't need some meds to make up for the missing lobe.

My appointment with the surgeon is Feb 17; I'll know more after that. Thanks to all of you who held me in prayer and have with me been anxiously awaiting the results. We'll be waiting a bit longer. The surgery isn't outpatient and due to the recovery time, I'll be waiting until after Easter to move forward.

Don't move

Don’t move, don’t swallow; you can breathe, if you can do so without moving.

That’s pretty much what the radiologist said and with my head hyper-extended for so long, that's definitely what it felt like. But it didn’t take more than an hour and everyone was nice. There were even fish on the light fixture, like an aquarium scene over the florescent.

Now there’s the pain in swallowing and talking--both things it’s hard not to do.

I’ve got my ice pack to reduce swelling and a nap ahead. They’ll have to wake me up before the oath of office.

I hope not to miss the inauguration party tonight.... my radiologist suggested a scarf to cover the site. He took two samples, said it was “easy to find” at 4x3x2 cubic cm. Blood pressure high but perhaps to be expected. I’m sure it’s better now. We’ll know the results by early next week. There are two different types of thyroid cancers to investigate and one of them isn’t easy to find through biopsy so the news may be “indeterminate,” they keep warning us. But again, the vast majority of these things are benign and that’s what we all expect.

The radiologist got a page as he was finishing up. The first one he'd ever received, he said, from administration, and it warned staff not to log-on to access the inauguration because it might affect their system. Bummer. This is a moment of national pride and hope and it should be available for all of us to witness. The tech said she was headed out to the waiting room (where the TVs are) at noon. That seems to be the way to experience this historic moment--in community.

Control freak

Advent is season that celebrates interruptions. The annunciation interrupted Mary. She was in the middle of wedding planning, and was interrupted. Lauren Winner, a Duke professor writing in The Christian Century, said having a child is synonymous with interruption, so the good tidings Gabriel brings are tidings of a lifetime of interruptions. Winner goes on to marvel at what it takes to embrace an interruption. She said she’s not especially interested in being interrupted by God. “God’s plans seem rarely to coincide with my own.” Interruptions, she said,

lead to uncomfortable glimmers of self-awareness; they show me to be a prideful control freak who dares to think that whatever I’ve got on tap for the day is supremely important and who dares to think I own my precious time. They are interruptions that, when I let them, foster a little humility. And it is that hard-to-swallow fruit of humility that allows me to sometimes recognize these interruptions as God’s way of gradually schooling me in the grand imperatives of letting go of all I cling to and following Christ.

I’m pretty sure this latest diagnosis isn’t God trying to interrupt me. More like an annoying cat in your face begging for attention by digging his claws into your skin. (Did I say that out loud?) But this interruption has led to some uncomfortable self-awareness. When the ultra-sound came back problematic but I couldn’t get in to see a specialist for three and half weeks, it wasn’t the possible cancer recurrence possibility that concerned me as much as the inability to get everything taken care of in the week I had off at the end of the year.

If you know what I’m talking about, raise your hand. Control freaks unite!

Advent, the season of interruptions, is now past but I’m still waiting for another kind of interruption: the interruption of God’s revolution into the world–where endocrinologists are plentiful but we’re all too healthy to need them.

In the mirror

It's time to crank up the healthcare blog again. We had hoped it would sit rusting away in a corner of the back yard, but a new healthcare adventure means there's a reason to drag it back out and get it working again.

They tell you to perform monthly breast self-examinations religiously. But there’s no educational campaigns about the importance of regular neck examinations. So when my new primary care physician (the former had to resign due to cancer treatments), said to me, “Are you aware that you have lump on your thyroid?” I replied, “No, I hadn’t noticed,” and then quickly added “I’ve been pretty much focused on my breast.”

It’s embarrassing really to be so clueless about a part of your body. Especially a part that's visible each morning in the mirror and is rarely covered by clothing, except for this time of year. And now that it’s been pointed out to me, I can see it when I look closely. But in my defense, I’ve had a ton of doctors (even one as recently as November) poking and prodding on me these last few years and none of them noticed it either. Even when I was complaining of hoarseness, acid reflux, etc. We all counted it as side effects to the chemo-prevention drug Tamoxifen. In hindsight, I probably should’ve been paying closer attention to my neck since my great grandmother and mother both have “thyroid issues.” But when I went in back in 2005 with symptoms that could relate to thyroid problems, they told me it was nothing.

What can I say? Sometimes it takes someone new, who’s not familiar with your story to offer a new insight into your life.

The ultrasound in December showed three masses on the right side of the thyroid–one large, one smaller and one cyst. The last two they figure are benign, the larger growth is “worrisome.”

So now I have a new specialist to add to my again-growing three-ring “healthcare” binder that I had rejoiced putting in a back, dark corner of the office in a November 8, 2006 blog entry. An endocrinologist who recommends a needle biopsy scheduled for the 20th. There are usually some problems getting results from such biopsies (these tests are notoriously indeterminate for thyroid growths) but the Dr. says mine is so big that she’s confident they can get enough cells to determine if it's one of the two kinds of thyroid cancer or is (the more likely option) benign.

The next step would be surgery. I have a retired colleague who could no longer preach after her thyroid surgery because of low volume. NotherFrog said not to worry, if I wrote the sermons, we’d find someone to read them to the congregation.

By the way, for those of you wondering what I was when I first heard the news back in December: breast cancer does not normally “re-occur” in the thyroid. So if it is cancer, it’s a new one. That’s something to celebrate because thyroid cancers are much easier to treat than recurrences.

Drainage day

FrogRev is home resting. The aspiration this morning went fine, with a good bit of liquid removed. The color of the liquid (yellowish) was what one would hope to see when one has liquid drained. Blood in the drained stuff would have been a bad sign. The doctor said it looked like a hematoma that had resolved. Nothing to worry about. We hope this is the end of needles and bandages for awhile.

Monday's results

The results are in from Monday's ultrasound and mammograms, they've been reviewed by the doctors, and there is no evidence of recurrence. YEA! They did discover a "significant" collection of fluid, which sounds better than the more official "cystic lesion" that they want to remove. So on October 30, they'll puncture with a long needle and drain it. That's the plan. If it's not drainable or looks suspicious, they'll send the tissue off for more analysis. Still it feels like there's a light at the end of tunnel. More troubling is my follow-up appointment on Nov 6 with the "weight study" oncologist. I need to lose 15 pounds. Anybody know any good "dark chocolate" diets?

Choice

In my last round of follow-up appointments with surgeon and radiologist, it was decided that another ultra-sound and mammogram are needed to explore a hardness that won't seem to heal. Since I am none too anxious for more surgery--which is what happened in May after the results of the last ultra-sound found a mass--I argued against these additional tests. But my radiologist assures me they are necessary to ensure that cancer is not involved and that surgery will only be recommended this time if there is a recurrence concern. It seems clear that because of radiation my cells are permanently altered and will not heal "correctly" ever again. The key now is strategy to deal with the site and pain.

I had so hoped to put this whole experience in my rear view mirror as a bump in the road or a detour on the journey. Now over 17 months after the original diagnosis and two surgeries later, I'm beginning to rethink that analogy because it only makes me anxious that I have not yet achieved that goal. So the question has become how to live even if I never make it back to my original route?

I think back to my hiking experience this summer in Whistler, Canada, with a group of adventure travelers who were all about the destination. They "raced" up mountains and missed out on a lot of wildflowers and wildlife. I thought maybe they were trying to get to the top more quickly in order to have more time enjoying the majestic views of the glacial lakes, but not long after they arrived at the top, they were anxious to head back down. It seemed they preferred to have "had" the experience more than wanting to savor the experience.

I'm not sure how you savor repeated setbacks with regard to medical treatment, but at least I'm choosing to avoid focusing on the destination. The next round of tests is scheduled for October 1. May I be attentive to the scenery along the way.

The Ponds

In life, much is a matter of perspective. This weekend, when my surgical site started sloshing around and gurgling like a pond had formed in my breast, it was scary, to say the least. However, when I called the surgical "on call" team to report this distressing development they said, "Oh, we often hear that." Today at my follow-up surgical appointment, the surgeon went so far as to call such sloshing "normal." Apparently, when the surgeon removed the problematic tissue creating what she called "a rather large cavity", the body "naturally" fills that space with fluid. It should go away in a couple MONTHS.

She also said the enormous swelling, redness, pain, and heat at the site are all "to be expected" because of the radiation last summer. She said we couldn't expect it to act like normal tissue since it had been radiated and would, from then on, respond differently. But from her perspective, the site was healing nicely. The swelling "should get better each month" with the hardness taking 4-6 months to heal. So I have a new normal.

The pathology reports came back fine. All scar tissue--no recurrence of cancer. The doctors had guessed that during surgery since they were unable to completely numb the site--apparently scar tissue that's in pain has raw nerves that are hard, if not impossible, to numb.

Thanks to a gift from a clergyman in Indiana, who I went to divinity school with some 17 years ago, I've been listening to Mary Oliver reads Mary Oliver At Blackwater Pond. She's one of my favorite poets and one I had never "heard" before. On the way home from the doctor, as I reflected on my new lopsided, fluid-filled, nervy reality, I heard her poem called, The Ponds, in which she reflects on the beauty and perfection of water lilies in a pond. She says this:

But what in this world is perfect:
I bend closer and see
how this one is clearly lopsided--
and that one wears an orange blight--
and this one is a glossy cheek
half nibbled away--
and that one is a slumped purse
full of its own
unstoppable decay.

Still, what I want in my life
is to be willing
to be dazzled--
to cast aside the weight of facts

and maybe even
to float a little
above this difficult world.
I want to believe I am looking

into the white fire of a great mystery.
I want to believe that the imperfections are nothing--
that the light is everything--that it is more than the sum
of each flawed blossom rising and fading. And I do.

While at the hospital, I visited a parishioner who carries her own pain. I suppose everyone carries some kind of pain, or imperfection, or flaw. All of us live in the midst of our own unstoppable decay, but this day I choose to cast aside the weight of facts and float a little. Tomorrow, maybe I'll expect to be dazzled and look into the white fire of a great mystery. Since I'm heading to annual conference, along with 1,000 other New England United Methodists, anything is possible.

Surgery report

The surgery went well--the incision this time is smaller than last year's, and the surgeon did find some tissue to remove. She said it looks like scar tissue only, but is sending things to the lab to make sure. FrogRev opted for local anesthetic, which made her more uncomfortable during surgery than general anesthetic, but shortens recovery time. FrogRev is now snoozing. Today's treatment is lots of ice, with a little extra-strength Tylenol thrown in.

New Cat Stuff

The cats got a new cat condo this week. Tabitha took just two days to completely destroy one of the little puffballs of yarn attached to the underside of one of the platforms. The pink fur puffball is now on in relief.

Healing Ahead

My doctor has now reviewed the slides with the radiologists. I've been referred to a surgeon to have the mass removed to promote better healing, reduce swelling and (in theory) provide pain relief. The mass IS NOT CANCEROUS. It's just slow to heal (most likely aggravated by radiation) and the Dr. thinks the area has a better chance of healing if the problematic tissue is removed. So we'll be meeting with our new surgeon (the old one changed to an administrative post at another hospital and took my radiologist with her) soon and we'll go from there.

Some news

For those of you impatiently waiting for the core biopsy results from last Wednesday. . . we apologize, results have come slowly and piecemeal and we were holding off hoping to have more complete good news to report.

What we can say right now is that the pathology report does NOT show a recurrence of cancer. (Insert happy dance here.) Unfortunately, the mass does appear at least a little problematic in that the doctors have been trying to do closer review of it. (Insert Charlie Brown saying, "Oh, drat!" here.) They're thinking surgery may be necessary to remove it. We hope that next week the right experts will have reviewed the slides and given us some more definitive news.

Quick Update

We're back home now after the aspiration. The person doing the procedure (all done with needles, by the way) said she's almost positive that the troublesome spot was just a hematoma, but she took some core samples anyway. She had almost talked herself into just draining the site and sending those samples for biopsy, but decided that it would be more convenient for FrogRev to go ahead and take core samples now just in case. That means more discomfort in the short term, but eliminates a return trip and more waiting if the biopsying person wants to see more than just the fluid drained.

The results take three to five business days, so we're probably looking at next Monday before we hear anything more. Until then, we'll go through some rounds of Tylenol and ice packs.

More news when the biopsy results are in.

The Echo Knows

The ultra-sound did find a pocket of something -- almost the size as the one drained last July. The radiologist is concerned with its appearance and so next Wednesday I'll go back in to get it removed and biopsied. The odds are on my side. The Dr. says there's only a small chance that it's a recurrence but it's necessary to make sure.

Cat Nap

Chasing sunbeams all day is tiring work.

Happy Spring

The American Cancer Society gave out daffodils today to cancer patients as we visited our doctors. Nice spring touch! I picked up the tulips on the way home so the daffodils would have company. The beautiful vase shows off my sister's creative talents.

I have a new radiologist since mine went to another hospital. The new guy's concerned that there may be a pocket of fluid contributing to the swelling and pain I'm experiencing so they're scheduling an ultrasound and when we see the results, we'll go from there.

I passed!

My first follow-up mammogram was today (about a year after the original diagnosis) and my breasts are deemed “stable.” That means I don’t need another mammogram until July. I’ll need them every 6 months for the first five years after the end of treatment, at which time I’ll be considered “cancer-free” and can return to civilian life with one mammogram a year. One down, nine to go.

The Return of the Cats - Catnip Edition

Yep, they're back. Here's Tabitha after a session with the just-filled catnip toy.

Fall cleaning

At an Advent planning retreat this weekend, a colleague asked how often I think about my diagnosis. The answer would be, "not at all anymore" if I would stop throwing up in the mornings or could get the pain to stop reminding me. But since I don't see an end to either of those things anytime soon and since I'm ready to move on, I decided to put my cancer resources away. Which means I got to go through all the cards that were prominently displayed before I packed them away. Great irreverant ones, inspirational ones, funny ones, beautiful ones. Some senders dared to write a few words of encouragement, others dared just to send a signed card, knowing there are few words to say. My church is in the middle of its stewardship campaign. The theme is Dare to Dive In. I thank all those who dared to dive into this journey with me.

I also re-read a packet of writings from my friend regarding her treatment and re-discovered that she too had trouble understanding herself in remission since our bodies are so changed and the 5 years of Tamoxifen prolongs treatment and side effects.

The research, diet, and treatment books have been staring at me from the shelf beside my bed for eight months. Most will now go to the church to start a new breast cancer section. We've had two women diagnosed since me. That way they'll be there for others, and possibly me if there's recurrence. My two 3-inch binders with my medical history got put in the back corner of a shelf in the other room where they are no longer visible.

I cleared two shelves. They--as well as me--are now cancer-free. Then I cleaned out the litter boxes. Life goes on.

Heart Health

My dad went in for a routine stress test on Wednesday before scheduled to get on a plane to Massachusetts on Saturday (some people will do anything to get out of coming to New England). He failed the test, then failed the angiogram on Friday and the doctor told him he wasn't getting on a plane. So they took him in for an emergency quad-by pass. Things went as expected. We brought him home late Monday night and he's been improving slowly ever since. He's adjusting to the 6 new medications and the pain. We're recording weight, pulse, blood pressure several times a day. He's supposed to hold an oversized heart pillow to cough, rest with his his leg up over his heart several times a day, and walk a little further each day. So far, we've achieved most of the instructions but are working on getting the contrary patient to follow others. He has a follow-up appointment next week and starts cardiac rehab the week after.

They said the problem was that he felt no pain--had no symptoms. Those are the kind that just drop dead. Since he has an acceptable cholesterol and hikes a lot--this summer in New Mexico at quite an elevation--he couldn't understand why this happened. Tomorrow he's missing the Beerfest in Boston with NotherFrog.

Dad just walked in (he should be in bed) and says I should say something nice about him on the blog. How about this: he's a pretty cool dad! . . . with an awfully big scar.