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!

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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.

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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?)

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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!

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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.

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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!

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