The Thankfulness Edition

In honor of Thanksgiving, I felt it appropriate to write a "thankfulness" edition of my cancer blog. (We will no longer be referring to Lucille, because she technically no longer exists. Good riddance!) I truly have a lot to be thankful for this year, so please bear with me while I selfishly list them out for you.

1. My cancer is gone! I am completely done with treatments and now fall into "follow-up" mode. Yeah!
2. I am thankful for the power of the body to heal. For the first time this past weekend, I was able to clean my whole house and just today, I was able to jog on the treadmill with no pain. Miraculously, my skin is returning to normal. (If you thought I posted the turkey in honor of Thanksgiving, think again! In actuality, the turkey's face flab is the best approximation of what my skin looked like a few weeks ago. Well, sort of -- I'm exaggerating a little bit. Perhaps.)
   
3. I am thankful for modern medicine. A century ago, I would have eventually died. Sixty years ago, I would have had my whole breast removed -- no questions asked, then who knows what kind of follow-up care. Just fifteen years ago, I would have been assured a mastectomy plus chemotherapy. Today, I was able to choose, with confidence, the least invasive form of treatment with the highest rate of survivability, which included no chemotherapy.
4. I am thankful for the willingness of all the thousands of women (and men) who have lived with breast cancer before me, who donated their bodies/tissues/stories to science in order to give those of us living today the best treatment options.
5. I am thankful for my family. Everyone got down in the dirt with me. My children lived bravely through the scary days, and had patience with me when I got down. They are such strong, mature people. My husband stayed close and played note-taker when I couldn't think straight. When I yelled or cried, he just hugged. When we woke up together on Thanksgiving morning, the first thing he whispered to me was "I am so glad, more than ever, to have you in my life." Amen to that.
6. I am thankful for caring friends. I can't list all of the wonderful gifts, meals, flowers, cards that I received, but please accept this as my blanket thank-you. I am especially thankful for: a friend who called every week with sincere interest in every last detail of my treatments (I'm a talker, so it helped me immensely to be able to process that information with you); friends who visited me (and even flew in!!) to give me encouragement and support; a friend who arranged all my meals and took me on an unexpected, but cancer-kicking shopping spree; and a fellow cancer-struggler who shared with me her beautiful outlook on life and living before her death.
7. Finally, I am thankful for the experience. It sounds crazy (especially as I write it), but I truly feel thankful to know what it is like to face the diagnosis, and the uncertainty of cancer. I worked with dying cancer patients for years, but did not truly understand the grip of fear that it brings, nor did I truly understand the powerful well of hope that can spring out of such a difficult situation. I get some of that a little better now, and I'll be a better person for it.

Finally, thanks to all of you who were interested enough to read about my experience. Writing is my best form of expression, and it helped me to put all my confused feelings into written words. I hope all of you had many things to be thankful for this year, as well. In the end, life is good. Life is beautiful. If you have the open heart and mind to see it.

Posted with Blogsy

Feel the Burn

So Mom decided to dress up as "dead woman" this year for Halloween. It was easy. It's not too different than how I actually feel. I've tried to avoid it, but you may have to endure one "pity-me" post.

Aside from the first week of diagnosis and the mental terror it brought, this past week has been the hardest week of all. Surgery was more painful, but radiation has been relentless (and let's be honest -- I had really good meds after surgery). 30 days does not sound like a long time until you hit the 20th day or so. Mentally, I am done. I'm tired of the reminder every day at 1:30 that I have cancer. I'm tired of the impersonal buzz of the radiation equipment that could care less about the state of my skin below. I'm tired of dressing in hospital gowns (especially the ones with the rips in awkward places that you don't notice until you're in the chair). I'm tired of layers of creams on my skin that no longer help (and in fact, sometimes aid in the process of sloughing off skin when it sticks to my clothes -- oops! didn't see that coming!). I'm tired of feeling disoriented and forgetful. I'm tired of being tired, basically.

Mercifully, the doctor decided to remove the bolus from my treatment regimen (remember that thick, folded-up piece of love that brings the radiation up higher into my skin?), but the damage had already been done. I am peeling and burning in places I would not have guessed possible. And my nerves are -- literally -- shot. I have shooting pains in the same area that are mildly alleviated with ibuprofen. (Hmmm...that leftover surgery prescription is looking pretty tempting at this point...)

I have three days to go. I thought I would be excited, but that has been tempered by the realization that recovery will likely go on for weeks afterward. I know I'll get to the morning when I wake up and say, "Hey, I feel normal!" but that will take a while longer than planned. Celebrations might have to be postponed.

I am so grateful for the calls from friends and family during the long haul. While I may "look great," (cancer Kristen forgot to tell mother/worker/wife/grocery-shopping/gym-visiting-so-I-can-keep-up-my-energy Kristen to take a break), the mental and physical struggles have increased dramatically these last few days. I appreciate the check-ins and support. Continue to be gentle with me and especially my super-patient and super-wonderful spouse (who has done more than his fair share of consoling a weepy pile of mess lately).

We're almost back to full speed, but we may need a little more time than we anticipated before we leave the zombie days behind. And I promise: no more pity posts!

Posted with Blogsy

Fried Chicken

Baked potato, fried chicken, Baked Alaska...what do all these things have in common?

If you guessed the foods Kristen has picked for her last dinner on the planet, you'd be wrong (well, except for the fried chicken...that is definitely on my meal ticket).

No, these are all ways I've described how my skin was feeling at the end of last week.  Up until then, my skin had been holding up really well, but suddenly I was turning very red in an area I really didn't want to be turning red. (Think marathon runners, surfers, new breast-feeding moms -- you get the picture, right?)

The cause was simple.  Because my tumor was so shallow, the radiation oncologist ordered the use of a bolus on my skin when I receive radiation.  The bolus itself looks and feels like a washcloth folded three times and is draped across my -- well, see above.  The effect of the bolus is that it draws the radiation closer to the skin's surface.  Therefore, the skin in that area is receiving more of the radiation.  The doctor considered removing it due to the increased redness, but decided to keep it on to ensure no cancer cells would remain in that area. To be honest, I didn't want to cut corners if it was needed...so, full steam ahead.

Luckily, I found a way to manage the symptoms.  I had tried every tincture and ointment to tame the burn, including Aquaphor, aloe gel, Miaderm cream, hydrocortisone, and even an antibiotic (the doctor thought an underlying infection could have been to blame), but nothing really worked. In desperation, I used a gel-cream combo given to me by someone at church (go Melba!) whose relative swore by it.  It was heavenly.  I'm still sensitive and a little sore, but not rolling up in a ball of hurt like last week.

A few more updates:

My energy level is good.  Saturdays, especially, I feel really great.  Just don't try to have a conversation with me after 9:00 pm.  It won't make any sense.

Yes, I have turned into a hairy Sasquatch on one side, or as the more sophisticated among us like to call it, my European side.  And, nothing against Tom's of Maine, but I don't think Tom and his cohorts have experienced sweat like we have it here in the southerly climes. I won't miss my all-natural deodorant when this is over. 

I have 10 more treatments to go, then I'm done.  I'm trying to plan a big way to celebrate.  

And finally...we have been treated like royalty with all the meals brought in the last few weeks. We are so very blessed to have such wonderful neighbors, friends and church members to take care of us.     

Just a little glad we haven't seen any fried chicken come through the door...

Getting Radiation is so Totally...Mental!

11 down and 19 to go...

It's just souped up x-rays, right?...

At least I didn't have chemo...

Thank goodness I don't have to drive to Columbia every day. Now THAT would stink...

This cream is *magic* cream. I'll just smear it on. No burns for me, no sir...

And on and on go the mental games. I think if you asked a group of cancer patients what it's like to do battle with the dreaded C, both during treatment and the years after, most would tell you that it is a mental fight as much as a physical one. Because the treatment for cancer lasts so long (I'll be hitting three months exactly from diagnosis date to end of radiation; for whose who have chemo, herceptin, or other adjunctive therapies, add another 3-12 months), I've come against the "I'm-so-over-this" wall many times. Heading off to radiation on your daughter's birthday is not fun nor welcome.

Also, it's not unusual for the circle of support to suffer compassion fatique. You get lots of calls up to and around the date of surgery, but the check-ins peter out during "rad" time, and everyone's lives move on while you're still checking in at the hospital desk. (Every day. At 1:30. They don't ask for my name anymore. Yep.)

Then there is the radiation itself. I have to be honest, radiation freaks me out a little bit. It's invisible, but you know it's killing cells -- good and bad. My skin is still intact and normal-looking, but I have small bouts of fatique that make raising newborns seem easy-peasy, and all my surgery sites zing and ache again. I learned about the interior soreness the hard way when a slight readjustment in the bed one night sent a shock wave of pain throughout my armpit. (Or, maybe I should not have moved that dresser earlier in the day...no one told me I couldn't do heavy lifting yet!)

The radiation experience itself is so isolating. You lay on an elevated bed under a huge energy-spitting machine while everyone runs out of the room and hides behind a lead door. "Oldies" play in the background. I compare the whole experience to what it would be like to be probed by aliens with their invisible death rays while they play music they think is comforting to you. "Duke of Earl" will forever be a creepy song to me.

But, I tell myself:

It gets a little less creepy every time...

I am 11 days through...

I am most definitely going to be able to lift heavy dressers some day...

And best of all, I won't have to get zapped on my birthday at least.

Posted with Blogsy

Radiation: Lucille's Last Round, or How I Changed into a Hairy Sasquatch

The past few weeks have been surreal. I've been feeling better and better. The trombone-playing earthworm in my armpit has now reduced itself to a piccolo. I can lay on my stomach to sleep again! Even the side effects of the tamoxifen are not as horrible as I was expecting. Instead of hot flashes, I tend to get hot spots. I'll wake up in the middle of the night with a sweaty foot, or sweaty quads. This morning it was my neck. I can deal with that! As for moodiness, my family would attest I am always moody, so what's new there?

To celebrate the nice weather and my body returning to normal, we've been getting out as a family -- most recently a trip to an apple orchard. (I promise Elijah had a better time than it appears! He's nailed that teenager-y "eh" look.) My work has returned with a vengeance as well -- lots of clients, several grants to write and file reports on, a Sunday "preaching" gig (wha???), and committees gearing up to do good work for the city. It's almost as if Lucille is gone for good.

But she has one more round of tricksy up her sleeve: radiation. Today I start 30 treatments -- five days a week for six weeks. Some of you may be wondering, "Why do you need radiation, Kristen? Didn't they remove all of that dastardly dame when they cut you open?"

Well, yes and no. Yes, they removed all obvious bits and bobs of Lucille. They removed the tumor and a clean margin around it. What they could not remove were any microscopic cells of Lucille that may have remained in the surrounding tissue. And if Lucille were to come back, she would set up camp around the same fire pit. Why dig another hole?

As you recall from a previous blog, I am guarding against the likelihood of a distant recurrence with tamoxifen. To treat the likelihood of a local recurrence, however, we have to use radiation. My radiation oncologist (another really nice doctor -- I so lucked out!) explains it in terms of numbers. Lucille is a scattered and broken army outside of the breast. Tamoxifen is all I need to root her out from distant outposts. But at the tumor site, she's most powerful (think Mordor, people). Tamoxifen alone won't conquer her for good. We have to send in Frodo with his super x-ray powers. Okay, that wasn't in the book, but you get the idea.

Coming up to radiation, I've noticed myself saying to friends and family, "Oh, it's just radiation, it should be fine." That comment, of course, is born out of the fact that I did not need chemo. (Let's face it, you'd have to be a little crazy to prefer chemo to radiation.) But a great church friend, who herself did both treatments, reminded me to continue being gentle on myself. Radiation may be better than chemo, but it's still a TREATMENT, and it still carries some unpleasant side effects. Those darlings include: fatigue (most reported side effect from everyone I've talked to), itchy skin, flakiness, skin darkening and for an unfortunate 5% of patients -- broken, weepy sores. They carefully watch your skin for any changes as you progress, so I've been promised good intervention if anything gets hairy. And speaking of hairy, I cannot shave under that armpit for the entire duration, nor wear anything but "natural" deodorant. You may want to talk to me on the left until Thanksgiving.

So I'd be lying if I said I was not nervous about radiation starting today. Yes, it's just radiation, but it's a final reminder that cancer is one tough nut to crack. It's hard to feel so good right now, and know that I am willingly making myself feel bad again-- all in the name of ridding this thing from my body for good.

Then I look at the picture from the orchard, and I remember the real reason I'm doing all of this. Mom/Wife is needed. Mom/Wife is loved. Mom/Wife is ready to be back in the game! (But be gentle on me for the next six weeks, okay?)

Posted with Blogsy

Card-Carrying Member of the Pill Box Club

From the beginning of my diagnosis, I've joked with every doctor, nurse, technician, etc. that I am a poor candidate for "cancer patient." I do not like doctor visits; I am not a fan of blood-sucking; I avoid unnecessary pill-taking like a vegan avoids bacon. So imagine how thrilled I was to bring this home:

A pill box. Don't get me wrong...I'm a fan of the pill box. I"ve counseled many patients as a medical social worker on its benefits. But me? That's for later...when diabetes catches up with me or worse yet, Alzheimer's, and my brain becomes addled. Not at 41!

But here I am, needing a pill box -- mostly because my ability to remember to take pills on a twice daily basis is tenuous at best. (Especially if the time to pop said pills coincides with the dog peeing on the carpet or a pot boiling over.) My medicines, however, I cannot forget. Here's why...

Pill no. 1 is Tamoxifen. This is as close as you can get to an anti-cancer pill. Because my cancer is so estrogen receptive, I need to shut down the ol' estrogen factory in my body. For pre-menopausal women, this is done with Tamoxifen. I will take it for TEN years (or until menopause, whichever comes first -- I'm not taking any bets). Tamoxifen blocks estrogen from entering (thereby feeding) any cancer cells freeloading in my body. In other words, it reduces the likelihood that my cancer will return in another place in my body (which is bad, bad, bad). And since my oncotype score was so low (refer to my hyper facebook post a few days ago!), I will not need chemotherapy. The doctor describes my cancer cells as "lazy bums" who won't even open up for chemo. So Tamoxifen will provide the only defense against my cancer returning elsewhere. (Which is, if you ask any cancer patient, the true demon that keeps you awake at night.)

Pill no. 2 is one baby Aspirin a day. The most serious side effect of Tamoxifen is blood clots. While rare, it's serious enough to warrant joining the ranks of the baby-aspirin poppers.

Pill no. 3 is a combination Vitamin D/Calcium supplement. I had very few risk factors for breast cancer -- no family history, no health concerns  (I'm the healthiest I've ever been, thank you), and no midnight dips in radioactive pools. I did, however, show a deficit in Vitamin D. While I probably discovered that fact too late to make a difference, it is one of the few risk factors I had for the cancer. Low levels of Vitamin D have been connected with an increased incidence of breast cancer. (Have your levels checked ladies, especially if you live in the northern climes, or have a strong aversion to outdoor activity.)

Pills no. ? and ? are unknown based on the side effects of treatment. Tamoxifen is notorious for bringing on some wicked hot flashes. (Menopause mimicry for 10 years? Yes please!) So I have a script for Neurontin "just-in-case" I wake up in a waterbed. Another "just-in-case" script is for Keflex, an antibiotic. Evidently, having a lymph node removed (even one) increases the risk of infection in my right arm. The doctor recommended taking it for a few days if I scratch or otherwise cut myself on that arm. Good thing we are not cat people!

And thus I have entered the land of the pill people! I'll let you know how those side effects go...

All of my mock-whining aside, I still remain very, very lucky throughout all of this. My course of treatment has been manageable, extremely tolerable, and above all, hopeful. My personal hope is that you sense all of these things by reading the blog. Cancer is not the last word for many people. No matter how serious, or at what stage, cancer can be met head-on and faced with dignity and humor by any of us, even the ones who weren't cut out to be cancer patients.

Just ask my doctor. Yesterday, she waved her arms when she reviewed my oncotype test and joked, "Can we clone you?" Yep, that's me -- Phi Beta Kappa of the cancer world. I might make a good patient after all!

Posted with Blogsy

Cancer is No Wallflower

Would you believe that Lucille can actually be boring at times? I actually spend long stretches of time feeling (dare I say it?) normal. Like now -- I'm waiting for the lab test that determines my chemo status; I'm waiting to recover from one treatment before another treatment begins; I'm waiting for the apology letter from the lab stating "Oops, you don't have cancer. Our mistake! Here's a gift certificate for ice cream. No hard feelings!" (Okay, not true...this phase has passed...really. But heck, I'd take ice cream over cancer any day!)

Recouperation from surgery has also been mostly, well -- boring. (I even felt well enough for a hike with Daniel today -- and another unapologetic selfie!) I'm healing well, except for some lingering nerve issues under my arm. The surgeon explained that there are major nerves running through the area where the lymph node was removed. While the nerves were not cut, they were stretched and fondled in the surgical process, and they didn't like it. In some spots I'm numb. In other places, I get occassional shots of pain. (I compare it to having an earthworm in my armpit playing the trombone. I twist my arm a certain way and "breee-oooop!" It's the weirdest sensation!)

By far, the hardest part of recovery from the surgery was the day I had to remove my bandages. While certainly not comparable to a full mastectomy (see section on "survivor's" guilt below), a lumpectomy comes with some apprehension of its own. I wondered what kind of changes I'd see -- whether things would "match up," so to speak. I wondered what the scar would look like. Daniel kindly stayed with me through the whole event. I think I squeezed his hand harder than during Maggie's birth! Thankfully, the end result was more pleasing than I had prepared myself for. While there are definitely some visible scars and modifications, John Q. Public is pretty much unaware that anything happened to me. I even had to pack up all the Laurel and Hardy/Abbot and Costello jokes I had prepared for the blog. Oh well....

We did receive some very good news after the surgery. My thyroid nodules were benign. (Evidently, some women are lucky enough to battle thryoid cancer at the same time as breast cancer. This will not be my journey. thank goodness. Plus, it's hard to think of a good masculine name to complement Lucille. It's best we didn't have to add that dance to the ticket!) The post-surgical lab confirmed there was no spread to the lymph nodes. So, as the surgeon predicted, the cancer had not moved beyond the initial tumor site. Finally, the tumor was removed in its entirety (those in the know call that "negative margins"). No more surgeries are needed.

And so, in the midst of all this boring news, I come to the topic of "survivor's" guilt. It's not a completely accurate phrase to use, but it approximates my recent feelings about my cancer. I feel very lucky to have caught this early. I feel very lucky to be able to choose a lumpectomy as a treatment option. I know others whose struggles are more complicated and more dire. I have a close friend at this very moment fighting against a very advanced cancer in several organs. Suddenly my cancer looks like a splinter. Incredibly, I traveled from earth-jarring fear a month ago to now feeling like I got off easy. My counselor-trained mind knows to scold myself over this, but it's my frame of mind at the moment. (By the way, I have a feeling when I start radiation treatment and when/if I end up needing chemo, I won't feel so lucky.)

In the midst of all the roller coaster emotions, it mostly helps me to pray -- prayers of thanks that my cancer is treatable; prayers of intercession for other friends in the midst of some serious battles; prayers of peace and comfort for all of us. Because even when Lucille is a boring dance partner, she is never a wallflower.

Posted with Blogsy

General 'Sthesia and His Minions

Here is the abbreviated play-by-play of surgery day (as best as I remember):

• 7 AM: Arrive at hospital.
• 8 AM: Prep and IV started.
• 9 AM: Surgeon informs me that surgery will be delayed several hours because of an emergency room case. "No problem!" I say. "You take care of business!"
• 9-11 AM: Visit with family and friends. Consider throwing something at the clock.
• 11 AM-12:30 PM: Watch lots of TV, mostly Food Network. Stuffed tomatoes never looked so good! Under advice of my husband, I change channels.
• 12:30 PM: Surgeon reappears and thanks me for being so patient. I make sure she's going to eat lunch and get recharged. I recommend stuffed tomatoes.
• 12:45 PM: Finally (hallelujah!) rolled to OR. Heartily proclaim to the anesthetist that I still have a strong grip on reality. All goes black.
• ???: Lights, nausea. A pesky post-op nurse keeps asking me how I feel and feeding me ice chips. I ask, "What time is it?" Nurse replies, "5:00. Let's get you up in a chair." I briefly entertain thoughts of injury towards said nurse.
• 5:15 PM: Husband joins me in recovery. I promptly throw up ice chips. "Now your color looks better!" says post-op nurse. I notice nurse is within striking range.
• 5:45 PM: We are heading home?!?! DId I set a record?
• 7:30 PM: Wake up in my own bed (how did I get here?) and ask why I'm home so soon after having "General 'Sthesia." Husband declares he now knows what I look like drunk.

Of course, Daniel remembers more important things about the day, especially the fact that my surgeon did not see any evidence of cancer in the lymph nodes. This is indeed good news. It spared me having a full axillary node dissection (a beast of a procedure), but also indicated that the cancer did not metastasize. We have to await the pathology report for final confirmation (Lucille loves to lurk in microscopic form), but the surgeon was very positive in her report. We'll take it!

I'm recovering well, athough it is taking me longer than I thought it would to shake off the effects of anesthesia and the horrid blue dye. The dye is used to identify the "sentinel" or first lymph nodes during surgery. Some women react with nausea and dizziness. Yep and yep. Fortunately, other effects of the dye have "passed." Lingering side effects from the surgery itself are fatigue, shooting nerve pain at the node incision and numbness (both normal and hopefully temporary reactions).

We have many thank yous to pass out: dinners provided by the Tucks, Delks and Scotts; visits at the hospital by Jeannie, Wendell, Dick, Ron, Denise and the Links; child-sitting by Grandma Nancy; and work duties being covered by Gart and my lovely CG volunteer crew. It helps so much to have love and support during this time.

While I am very glad to have this first step finished, it is a heavy reminder that I have just started this journey to recovery (from an illness I barely feel I have!). Many days of treatment are ahead, so we are determined to take it one day at a time. For today and this week, sleep and rest are enough. General 'Sthesia orders it!

Posted with Blogsy

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.

 

Posted with Blogsy

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.

Posted with Blogsy

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...

 

Posted with Blogsy

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