Time to Ante Up

When cancer entered my life over 19 months ago, I made decisions. Lots of decisions. What oncologist will I use? How many people will I tell? Which surgeon will I use? How many days will I take off work? What color lipstick will I wear to the radiation department today so that I don't look as bad as I feel?

Without a doubt, the biggest decision I made was whether to have a lumpectomy vs. mastectomy, or double mastectomy. I explained the choice I made (a lumpectomy) in one of my blog posts, here.

This is a complicated decision for many women, and one that is most often based on one question: How willing/able am I to bear the fear of the return of - or even a new - cancer? According to recent studies, more women are choosing double mastectomies, even with early stage cancer or with a lack of genetic mutations, in order to reduce the anxiety of follow-up. While the validity of that choice is under scrutiny in the medical community, the decision to have a healthy breast removed is still a highly personal choice and one that should be available to women who feel that the quality of their life would be compromised otherwise.

And I get that anxiety. For sure I do. I put a big, fat card into play 19 months ago, and this past week, it was time to ante up. I had my first abnormal mammogram post-treatment. This necessitated a return to the hospital for a diagnostic mammogram, then an ultrasound to get even more detail. By this point, I had mentally worked myself up to the next tier of scrutiny: biopsy. (Did I mention in my previous blogs that the biopsy was my least favorite cancer-related experience? Think of the sound and feel of a dentist drill but on really sensitive tissue -- yeah.) When a young technician returned with the radiologist's opinion that the abnormalities were likely small cysts that would need to be reevaluated in three to six months just to make sure, I felt no relief. I felt instead a deep sadness. Was this my life now? Callbacks? Weeks of worry? Biopsies until I looked and felt like swiss cheese?

Until...I remembered why I chose a lumpectomy all those months ago. I wanted the least invasive treatment, so that I could return to my family as soon as possible. My chance for recurrence was low; I had no family history; the cancer was highly estrogen-positive. Odds were in my favor, Effe. Knowing all these details, I told myself then that if the cancer returned against all those odds or even if I sprouted a new one (it happens, unfortunately), I could and would face it. So chin up, lady.

It did help, a little, to remember past-Kristen's reasoning. It didn't change the fact that Lucille still stalked me, panting hungrily on my heels like a relentless hunter. But if the Kristen who was in the middle of all the pain and treatment 19 months ago could stare down the long line of what-ifs, then present Kristen has no right to complain and worry. At least not too much.

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