Please Keep Hands Inside the Car at All Times

So, tomorrow--surgery. I'm ready. As far as surgeries go, a lumpectomy and sentinel node dissection is usually uneventful. (Dare I even say hilarious? I'll talk about my pending smurf makeover in the next blog.) But it took some gargantuan effort of my willpower to get there. In the immortal words of Inigo Montoya, let me sum up:

Most people who are dancing with Lucille will tell you that it is a hellish roller coaster of ups and downs and in betweens. The ups (and there are ups, believe it or not) are welcome glimpses of sunshine and daisies, often in the form of good news or family and friends. Other parts of the ride are long and flat, usually periods of exhaustion or waiting. (I have my least favorite waiting rooms ranked by the level of human body odor. 1=Wow, is that air freshener I smell?; 10=Holy Armpits, Batman!)

And the lows. Oh my goodness the lows. Last night, the cart actually derailed. Both my surgeon and oncologist had noticed that my thyroid glands were enlarged, but because there was so much else to talk about, neither followed up directly with me about a course of action. So whammo! Yesterday I get a call telling me to come in today (my day off from anything Lucille-ish, mind you) and get (yet another) ultrasound (ultrasound waiting room=8).

It might help to hop in at this point and explain the mind game I play with Lucille. I focus all my energy on the task at hand and she promises not to rock the boat: "What is next? Okay...I can do this. Okay, I did it. What's next? Okay, I can do this. Okay, I did it. What's next?"...and so on. But an ultrasound of my thyroid glands? A day before surgery? That is not the plan! Bad Lucille! My mind went straight to metastasis, and the roller coaster dipped farther than Dante ever dared to describe.

However, after a reassuring phone call from my oncologist (only half a day late) that the abnormality was not related to the cancer (I'll take thyroid disease anyday over cancer, thank you!), we breathed a sigh of relief. The glands still need to be biopsied (oh, yeah), but in a streak of good luck, they can do that for me while I sleep in blissful ignorance tomorrow.

So, back to the plan. Surgery. Tomorrow. Check. Time to look and feel our best. Nothing brings the train back in line than a good hairdo. Check. Buckled in. Check. Keep your grubby hands in the car, Lucille.

 

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Cards, More Cards and the Cloud of Witnesses

The cards keep rolling in.  And yes, Daniel has still given me a card every day since August 8 (D-day).  I'm beginning to worry about the supply for others at the local Dollar Tree.  I'm starting to see weird cards now, too, with nods to strange holidays I've never heard of, like "Happy Sweetest Day."  (Look it up, Midwesterners! Daniel assures me it's a real thing, and I bet you haven't reaped its benefits yet!)

The cards (and calls, and hugs and emails) remind me how wonderful friends can be.  So many people have wished us peace, hope, and health that I have lost track.  It also helps that I have a whole posse of friends at churches all over town because of my work at the community center. God's getting prayers from all sorts of denominations! (Here's a heartfelt shout-out to all my Methodist, Baptist, Episcopalian, Catholic, UCC, Presbyterian, CC and AME friends.  I really love you all and feel blessed to be a part of your lives.)  I literally feel buoyed up by all the prayers and thoughts of healing.

The second huge group of people I want to acknowledge are the breast cancer survivors (including current patients -- you are called a survivor from the first day of your diagnosis).  They feel like a cloud of witnesses around me.  I've had many women come up to me and tell me their story. There are unfortunately, lots of us.  ("We are legion," said one survivor.)  It helps to hear from past patients, because they are familiar with the current struggle, but they also know the hope at the other side.  It helps to talk with current patients, because they understand the fear and the need for grit and determination.

It has also helped me to hear the choices women have made in their course of treatment.  While each cancer is very specific and treatment methods are standardized according to your cancer markers, there are still some big decisions left in the lap of the patient -- especially the lumpectomy vs. mastectomy choice.  I needed to hear all the stories in order to make a decision for myself.  One wonderful church member and past survivor told me this past week, "You're hearing a lot of stuff right now, which is good, but you'll have to tune it out at some point and do what's best for you."

And it is very true.  It's like when I made my decision to breast feed or not.  Remember that, ladies who are mothers?  Remember all those experts telling you what was best or better or downright mandatory?  It was supremely stressful!  (At least the first baby -- by the second, I got my act together and did what I knew was best for me and my family, and I didn't look back.  I did breast and bottle, by the way -- but it didn't help the ol' cancer risk!)

After hearing all the stories, and after consultation with my doctors, I feel certain in my decision to have a lumpectomy.  Other women with the very same cancer and very same circumstances would choose a mastectomy.  There is no wrong decision.  It is a matter of what is right for you.  I am educated about the risk of local recurrence (down to the percentage point, thank you!), and I am aware that distant recurrence is equal with both. Most importantly, I feel that I can emotionally and mentally handle the stress of surveillance after treatment and (God forbid) a recurrence should it happen.  The benefits of returning to my family as quickly as possible and preserving an otherwise well-behaved bosom are my top considerations.

(Of course, if Lucille returns later, they're both getting a major smackdown.)

Permission-Giving

The results of the ultrasound last week finally brought some good news. The left side harbored a benign cyst -- nothing to worry about in the grand scheme of things.
"We'll keep an eye on it," the radiologist said, "but for now let's focus on moving ahead with the real issue."
Amen to that! Let's move this train down the track! (Plus, if the ultrasound had led to another biopsy, I'm pretty sure I would have been forcibly and permanently removed from the hospital in a fit of vulgarity. Best to stay on everybody's good side at the hospital.)
So surgery is scheduled for Friday, and we are discovering just what a pain in the rear it is to have cancer in your 40s. Let me be clear, cancer is no fun at any age. No one deserves Lucille at any point in their life. She is a crotchety old toad. But add two careers and four schools and kid's activities, and you have a recipe for stress soup. Something has to give!
And that brings me to permission-giving. It's a trendy term in my husband's churchy circles, but it works equally well when discussing a blooming health crisis and its effects on friends and family within the blast zone. Daniel and I call it "the no-guilt zone." Here is its manifesto:

1. I, as the cancer patient, am permitted to feel zero guilt about almost anything. By default, this rule extends to immediate family members. (Examples: The flowers on the back porch are dead -- you are forgiven! You don't get home in time to get Maggie to gymnastics because of a doctor appointment -- you are forgiven! You miss a meeting because the patient needs yet another blood test -- you are forgiven! You forget to feed the dog -- you are forgiven -- but eyed very suspiciously each meal time thereafter!)

2. Friends and family have permission to talk about Lucille in the cancer patient's presence. In fact, I encourage it. Let's face it -- very few of us are comfortable talking about serious matters with those people experiencing them. We just aren't well-trained in our culture to face disease and death with ease. But if you are worried that I don't want to talk about it, don't be. (Heck, I worked in hospice, people! This is a cakewalk!) Cancer can make you very lonely. I welcome friends who are willing to listen. If I'm tired of talking about Lucille, I'll let you know.

3. But the cancer patient must give you permission not to talk about it as well. It can admittedly be a huge downer, and some of us just aren't up to the task. You, my dear ones, are the designated party crew. Keep life light and joyful. That helps us as well.

4. The patient and immediate family have a right to be angry, upset, tired, confused and downright curmudgeonly. Nothing about cancer is fair. But we promise not to stay in that place for long. Life is too short and beautiful. For my own part, I am really missing my mother right now. She died 10 years ago.  (My dad knows the pain. He sent me my mother's cross pictured above to keep with me.) I miss her, because I know she would swoop in and hold me and keep the demons at bay. She would hold my children close, see them off to school, and promise them their mother will be here next Christmas and for many more Christmases to come. She would also laugh and joke with me about how at least one of my breasts will finally be as small as hers. But she is not here, and it makes me supremely pissed. However, when I am amazed by and humbly reminded of the love and support of our local friends, those even willing to be surrogate mothers and sisters, the anger subsides.

5. Finally, the cancer patient must give permission to herself to let cancer take a backseat. For several nights last week, I broke apart at the end of the day when Daniel and I descended downstairs. Before Lucille, this had been our favorite time of the day -- our quiet, "adult" time. But it turned into a sobfest. Then it dawned on me: it was Lucille's fault. She had plopped her fat butt right in the middle of us like the worst houseguest ever. The very next night, I chanted an anti-Lucille mantra at the bottom of the steps: "You are not allowed here. This is my place of peace and joy."

Guess what? She packed her bags and moved her caboose upstairs.

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The Dance of the Three-Toed Sloth

Lucille's latest perverse pleasure is to take complete and utter control of my time. She sucks time; she stretches time; she bends time to her will.  She is a time demon.

When you're first diagnosed with cancer (and after you emerge from the shock), you think you will move relatively quickly through the diagnosis, surgery and treatment process.  The reality is far from the truth.  The treatment of cancer is a long, drawn out and tedious affair (kind of like line-dancing with a three-toed sloth).

This week has been a marathon of diagnostic tests and doctor visits.  As I've already reported, I had the MRI on Monday.  On Tuesday, we had our first visit with the oncologist.  It was long (would you believe three hours?) and consisted of much blood-letting, but it was very informative.  I was told by my doctor (whom I love!) that if I had to pick breast cancer off a shelf at the local Piggly Wiggly, this is the one I would want to grab.  It is supremely estrogen positive, which basically means there are awesome tools in the oncology arsenal to fight Lucille down.  Score one point for Kristen.  It also means it is a good candidate for a lumpectomy, given my lack of family history and that the use of tamoxifen for years down the road will cover me like a protective hug from recurrences.  Score two for Kristen.  Radiation is a definite, although the use of chemo is still a question mark depending on another lab test post-surgery and on whether the lymph nodes test positive.

Today, we visited the radiation oncologist who explained radiation treatments to me.  That will come four weeks after surgery, then last another six weeks after that.  If chemo is warranted, it comes in between the two and lasts for another 12 weeks. (Remember, sloths dance very slowwwwwwwwwly.)  He also informed me that something "wonky" appeared on my MRI two days ago in my other breast, and an ultrasound was scheduled for tomorrow.  While it is probably nothing of concern, my heart still skips a beat.  Score one for Lucille.

If I've wearied you after reading this, I guess I've slyly approximated my experience over the last few days. But I have to run, because Elijah has youth group, I have choir practice, and supper needs to be fixed.  Life does not stand still for Lucille!

MRIs, Contrast Dyes and The Case of the Missing Report

Lucille's been busy lately.  She's been digging a big pit.  A pit that is large and black and deep.  She's brought me to the edge of the pit and asked me to take a peek.

"You don't scare me, Lucille.  I'll look into that hole."

So I creep to the edge, but it makes me breathless and light-headed, because I can't see the bottom.  And I am afraid -- very afraid.  It's easy to battle Lucille in the day, when life moves ahead.  There are lunches to pack, souls to counsel, and groceries to buy, after all.  But at night, Lucille grows strong.  And before every test, another wrestling match.

Today it was an MRI with a contrast dye.  For those of you in the know, an MRI is ordered for some women when a mammogram is inconclusive or not detailed enough to rule out a possible malignancy.  In my case, it gives my surgeon a better idea of what is going on inside, since my mammogram had not raised any red flags.  A contrast dye is given via IV to provide better clarity in the images.  I won't know the results for several days, and we shouldn't be given any surprises, but still...

The real anxiety for today, however, was locating my evasive pathalogy report.  Each person's tumor is screened for several factors, including its reaction to hormones and its characteristic growth proteins.  It's basically the road map the oncologist uses to create a treatment plan (chemo or no, and if so, what kind). Lucille's physical form was sent to the lab a week and a half ago, but she seemed to be lingering in medical limbo.

Finally, after numerous calls, we tracked down the report at the radiology lab.  Holy grail in hand, we've been mercifully moved up to see the oncologist tomorrow.

Suck my big toe, Lucille.  I think I see a light at the bottom of the pit.

Cards

Daniel's given me a card every day since the diagnosis. Maybe I should remind him that cards are not covered by our insurance? Nah...

 

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At the end of week one: choices

Here's one thing I do know: this is the scariest bag of doo-doo I have ever had the pleasure of carrying around.  Lucille not only continues to hang around, she insists on soiling the place.  I yell and scream at her, but she doesn't care.

Yesterday was fatiguing.  I had my first appointment with the surgeon.  She is highly competent and will take the best of care of me.  Of that I have no doubt, amen.  But as a highly competent surgeon, she is supremely busy and was (by no fault of her own due to an emergency situation) several hours late to our appointment.  We were pooped before the real work of hashing out information even began, and at the end, we had a choice to make -- a difficult choice.

You may not know this, but many women with breast cancer are allowed a choice between a lumpectomy with radiation or a mastectomy.  Sometimes you don't get this choice if your cancer is a specific type or too large, but in my situation, I am given that choice.  There are drawbacks and advantages to both, and the risks of recurrence to weigh if a lumpectomy is chosen.  Survivability (a nasty word we only permit to enter our consciousness once a day) is equal with both.  So how do you choose?  I'm told you talk to friends, you talk to survivors, you talk to family, you talk to all your doctors, you talk to the dog if you need to, but you talk, talk, talk.  By the end, my surgeon assures me I will know.

The day did bring some clarity, as I came to a huge revelation on my part and a resounding affirmation from my husband: I am not my breasts.  In fact, I don't even feel the need for an upgrade after surgery.  We (and that pronoun is important) are just fine living the "flat-life-on-deck" if that is where this path leads us.  And for this small bit of clarity and decision, I am feeling thankful and at peace.

The "C" Word

You call it a lot of things to avoid the "c" word.  I told Daniel we should call it Lucille.  That sounds funny and innocuous, right?  Tonight, though, it felt like a big black dog that accompanies me everywhere I go.  Like Harry Potter's Grim, except minus the forecast of doom and death, I hope.

But it is what it is: cancer.  To be more specific, it is invasive ductal carcinoma.  It's the most common type of breast cancer there is, affecting 80% of the 180,000 women each year who are told that Lucille has parked her unwelcome Buick in one of your precious baby-feeders.

In some respects I am lucky.  I am lucky because I found it in the first place.  It did not raise its ugly head on my mammogram in February, or even on the diagnostic one I had just over a week ago.  I simply found something "that didn't feel right" before we left for vacation, made the (difficult) decision to wait until we got back to check it out, and up until the last minute, received assurances from every doctor involved that it "was probably nothing."  A biopsy was performed under low suspicion of abnormality, and only then did the dog lope into view.

We are at the very beginning of this journey.  Pathology reports are valuable commodities and hoarded as they become available like treasure maps.  Knowledge and a clear path are what we crave more than anything, but for those we must wait.  Waiting is always the hardest part.

At the advice of some really good friends who have lived with the Grim, we will update this blog with any news as it becomes available.  We love all of you and want you to know what is happening, but it will sometimes be exhausting for us to keep everyone informed.  Forgive us when we tell you too much; forgive us even more when we need to pull away and regroup as a family.

Thanks, and love to all,
Kristen