Empathy

This is a continuation of the previous posting about my shingles diagnosis. So if you haven't read that one, you'll have to back-track to see what that's all about.

God's given me yet another opportunity to increase my empathy meter. One thing I've learned through my whole experience (and there's been many), it's that God apparently wanted to bolster my empathy for other people. I've always known that it's a lacking area of my life, but I kinda chuckle at the manner in which God has chosen to teach me. I must be pretty hard-headed. ("No comment," says Josh)

Anyway, in talking with a friend at church she made the comment that she was surprised to see me at all because when her friend gets shingles (and it happens every time she gets stressed) 1/2 of her face breaks out in the rash. She doesn't even want to go out in public, and I can completely see why! The rash itself is quite ugly. It starts out blistery and then gets black scabs before drying up. I have one spot that created almost a crater-like sore and may leave a scar. Even now that it's basically 'cleared up' there's still evidence of where it was. I'm fortunate that it's on my shoulder. Even there, I've gotten many comments like, "Eeuu! That's a nasty rash!" Once again, God has shown me that there are many other people that have recurring troubles that effect their daily activities...often! How might I use my experience in its limited form to show active compassion, ask better questions, and choose my words when confronted with someone who is suffering? Have I done a good job of it already? I'm sure I've already missed the boat, but I'm trying and at least now I'm aware of so much more.

What else have I learned? I've learned that it's not so bad to be in 'the club that no one wants to join.' There really is an instant connection when someone I've never met tells me they, too, have or have had breast cancer. It's become a great opportunity for me to give hugs. Hugs are a southern thing that I miss. Have you noticed that southerners are quick to give a hug? We northerners are a bit more 'personal space conscious.' :) Once again, I've a chance to try out my newly developed empathy attribute. Praise God for short hair!

Below is a pic of said short hair taken at the recent Rockford Relay for Life. I'll admit I was completely 'anti-institutional' about it (that was Josh's word. I thought it was right-on!), but it was a good time and a good thing. Can you find me? I'm in the middle of my other River Rock relay friends: Larry, Dawn, Sharon, and Andrew. Unfortunately they're only a small sampling of those of us at River Rock diagnosed. I'm repeatedly amazed at how frequently I hear of someone else being diagnosed with cancer. It's running rampant. In my opinion we need to find the source to help the problems. I'm all for finding a cure, but we need to do our part for prevention and elimination of the causes as well...proper nutrition, fewer chemicals, more exercise - if you can't identify where all the ingredients of whatever you're consuming came from directly, I'm guessing God didn't necessarily intend for your body to have to deal with it. This is by no means limiting God, but rather a call for maintaining His temple, our bodies.

I'm getting all worked up - I better quit!

Up on the rooftop...

No, it's not Christmas in May...I have shingles now! (get it? rooftop...shingles? Ha!)

So here's the back-story. I got my port out on Monday, May 10 just as planned - so almost 3 weeks ago now. Two days later I had horrible shoulder tension (opposite shoulder) that I attributed to general tension or overuse (or is it something to do with the meds at port removal??). Tension/overuse seemed logical as we'd had a few weeks of a stomach bug running through our kids and I'd spent WAY too much time with the carpet cleaner. About the same time that the tension started I got a funny, rashy spot on my shoulder - you know, right where your trapezius muscle knots up - so almost directly over the worst of my tension and pain. (My dad used to grab those knots and squeeze them to release the tension if I mentioned I had a headache. I quickly learned two things: 1. Don't mention to Dad that you have a headache and 2. pressure actually does get rid of the tension!) So I was having a hard time figuring out the tension and the rash. Did I need to stretch the muscle? Exercise the muscle? Relax more? Was the rash poison ivy/oak from trompin' through the woods? Had I touched something and then pressed on those knots and now had some kind of contact dermatitus? Can tension come out through the skin? Was it sun poisoning? A radiation reaction? Strange reaction to the port? I tried stretching, yoga, relaxation, calamine lotion, hydrocortizone cream, Bag Balm, drying it out, you name it.

After about a week (which happened to be my self-imposed deadline for calling the doctor) the rash was beginning to resolve itself. What wasn't getting any better was my shoulder and muscle tension. After dealing with this 'muscle thing' for almost two weeks, I finally went the route of limiting the use of my arm. I wasn't so excited about it b/c the last thing I wanted was a frozen shoulder from not using my arm enough. (I typically do lots of stretching with that arm due to surgery and radiation. It tends to tighten up more than usual.) So a call to the doc was made and an appointment set for this past Thursday. I felt a bit sheepish about going and spent a great deal of mental energy coming up with a good explanation for why I was taking up an appointment slot because I 'stressed out' and unable to get rid of the tension in my neck and shoulder.

The appointment was uneventful and OT was recommended.

That evening Josh had a message on his cell phone from my surgeon that she had a question for me and needed me to call right away the next day. Upon calling and connecting with her nurse practitioner and answering a series of questions about the rash, it was decided that it was indeed shingles. (Great, I just aged about 15 years! Old people get shingles!) Upon investigation, shingles is fairly common after radiation. Wish I had known that!

So, now what exactly IS shingles? Shingles is dormant chicken pox that resides in nerve cells. When it's triggered, and 'they' don't really know what triggers it except maybe depressed immune system and stress, the virus moves out of the nerves and is usually evidenced on the skin as a rash (not always) and can very painful. It may seem strange to say, but YEA! It's shingles!! At least my troubles have an actual diagnosis and it's not stored up, unresolved tension. But I'll tell ya, now that I can connect the dots better... For days I was not sleeping well because of strange things going on, things like my arm consistently going numb, spasms in my back (my rhomboids), and an achey shoulder. It explains why my arm has been feeling heavy and tired. And probably I am quite tense in the shoulders trying to carry and manage the symptoms of this shingles-thing.

But the funny thing is, this time there's NOT a drug for this! Had I shown them the rash when it first showed up, they could've given me an antibiotic. And if it doesn't resolve soon, they have a drug to treat what I would presume to be early phases of postherpetic neuralgia. But we'll cross that bridge when/if we get there. Right now I'm just takin' it easy! Doctor's orders!! :)

I've got other pithy mostly non-treatment related thoughts that I'll put in another posting so this isn't so long.

Good news, good news!

Had my follow-up appointment with Dr. Campbell, the chemo guy. My concerns going into the appointment were that he'd tell me I'd have to keep the port in my chest for up to 1 more year, and that he'd 'strongly recommend' that I go on tamoxifen for 5 years. But I got good news for both! Yea!

The chest port is the 'convenient' device they (you know, 'they') installed under my skin near my collar bone so that instead of poking around for a vein in my arm at every treatment and blood draw, a poke in the port is a direct line to my jugular vein. It's convenient for the chemo folks, but no one else seems to know how to use it - or, sometimes, what it really is. That, and it's pretty goofy-lookin' - a 1 inch square bulge that stands a good 1/2 inch above the rest of my chest. Lovely! Dr. Campbell usually likes to keep it in for 6-12 months "just in case" (given my tumor staging), but a sympathetic nurse practitioner was in my corner today. So the port's coming out on Monday morning!! I can't believe I'm actually excited about a surgery. Weird.

As far as the tamoxifen... it's a drug that interferes with estrogen in the body. It's actually sometimes used for fertility issues (just what we don't need!) as it stimulates the ovaries to produce estrogen, but it also works to block the estrogen receptors in the cells. Because my tumor was estrogen-receptor positive (100%, thank you very much!), tamoxifen would be highly effective in stopping the growth of any estrogen-receptor positive cancer cells in my body. All well and good, except it also is just another foreign substance in my system creating potential nasty side-effects. So the question was: is the added benefit of taking the tamoxifen significant to warrant navigating side-effects for the next 5 years? Statistically, taking taxoxifen will reduce the chance of a recurrance by up to 50%, but if I only have a 5-10% higher risk of recurrance than the general population, then it only helps by about 2-7% - if I'm going the math correctly.

The nurse practitioner said she'd check with Dr. Campbell what exactly my 'numbers' looked like so I could have a good figure by which to base my decision. When she came back, she was very surprised by what Dr. Campbell had told her. His answer was that though my tumor was fairly large, we had treated it very aggressively - bilateral mastectomy, chemo, and radiation. So the chance of it coming back was already reduced significantly and that if I didn't want to take the drug, he could really argue against that decision. Yea! His response certainly made the decision easy.

So there we go. Just like that, I'm feeling completely free and clear of my cancer treatments. Hooray!

One to go!!

Tomorrow is my LAST radiation treatment!! Hooray! After that, I'm done, done - no more treatments. Reconstruction will happen in 6-12 months and follow-up visits once every 3-6 mo. for the next 5 years, but otherwise free of the whole oncology treatment department. Phew!

It's been a while since I did any updates so here goes: the hair is finally, actually, truly coming in - like real hair not just fuzzies. Think: Natalie Portman or Chenade O'Conner, at best. Last Friday I dared to go out without my hat on - amazing! Granted, it was kinda in a part of town where I'd fit right in with my shaven head and their dreadlocks, so it was a natural fit. I've been to the grocery store and to school without the hat, but at this point, a hat is more functional than an aesthetic issue - it's cold without it! The other day I was bawling in the car (for any number of reasons, right?) and Josh asked about my tears. My response: "It's all BREEZY around my neck!!" Such is life. I can't decide, on the other hand, whether to strive for the long hair of last year, or to stick with the low maintenance version I've come to appreciate. Long, higher maintenance and warm, or short, low maintenance and breezy? I'm certain I've ruled out the mullet, though it'd solve much of the dilemma.

Eyebrows are coming back, though it seems like all the ones I've been plucking for years are returning with a vengeance while the ones I'm currently coloring in seem a bit more slow growing.

Eyelashes - I've tried to mascara them, but to no avail. Soon, though, as I can actually see a whole line of small lashes marching across my eyelid. I've lost that gaunt, blank-slate, dark circles under the eyes look from chemo as well. Things are going back to the 'old normal'!

If I were to compare radiation and chemo, I'd say radiation is much easier in some ways. Chemo has this constant swing of symptoms to manage which is emotionally, psychologically, and physically exhausting. Radiation, on the other hand, is at least predictable - every day the same routine, the same side-effects (slowly increasing). On the flip side, chemo symptoms would generally resolve in a few days where radiation is definitely a cumulative effect. I was eager for Fridays to come around b/c no treatment on the weekend, but quickly learned the burning would still increase even without treatment.

The radiated area is finally starting to peel (or "desquamate" - a new word I've learned. You know, shedding of the squamous layer of your epidermis), but it's not the same looking peel as a general sunburn. My skin, over the course of treatment, had gotten dark polka-dots that eventually blended together. This is peeling off, but the skin below is not the healthy-looking pink of fresh skin. It's more of a fresh healthy skin with a pre-existing sunburn. So I don't know if this too will peel or what will happen. I don't even want to think what my internal organs look like!

Depending how the skin heals and if it thickens or tightens when it does, will determine if I'll need the lat flap for reconstruction (I'll let you look that up if you're interested. It borders on TMI for the faint of heart). Though it's not even been suggested that I would NOT have that done - it's generally the MO after radiation according to my perfectionistic plastic surgeon - I'm hoping that the skin will do so well that I'll be able to do just tissue expander/implant on this radiated side. While I'd like to think I'd be the exception to needing the lat flap after radiation, I also was under the impression I'd never get cancer. So my hopes are tainted with a bit of realism at the same time. All kidding aside, I'd really love to not have another huge surgery before this is all over with.

So there you go! Radiation: almost done Hair: almost in Skin: almost peeled off Hooray!!

Radiation

I've finished 12 sessions of radiation already, so that's about 1/3 of the way. Yea! So far I have not much to report. I still take it easy and tire out quicker than I'd like, but nothing a nap can't cure. And I'm just starting to see the 'sunburn' show up - especially under my arm. I was glad when Friday arrived this week because now I have two days without radiation to hopefully give my skin a break. Aloe, aloe, aloe!

On another note, not related to radiation (imagine that!)... I still continue to lose hair! It's growing on my head, but I've lost a significant portion of my eyebrows now. One got left behind in Florida so if any of you spring-breakers down there find it, I'd love to have it back! (Eeeu!) So now I can draw on my expressions: happy brows, angry brows, etc. It sounds a bit like a Mr. Potato Head! I'm told to expect hair to start growing back 6 weeks after chemo and this past Wednesday was it, so bring it on!! This past Thursday marked 5 months of no hair - we shaved it on October 25. That's a lot of hat-wearing!

The Future

Imagine, if you will (no, this isn't the beginning of a Twilight Zone episode, though maybe it'll turn out that way...) that the definition of 'future' was changed. I should explain that Josh & I have been challenged in the last little bit about what our future looks like, and then in church today I was challenged again. So here's what I've been thinking about lately:

What does "your future" mean to you? To me, I never gave it a second thought that I wouldn't live into my 80's at least (and there's nothing to say that I won't!). I figured I'd graduate my kids, do 'the 50's & 60's thing' whatever that looked like, age gracefully in my 70's and then die in my 80's. What if it's not like that? -- and this may turn morbid for some, so if you want to remain cheery, stop now!

What if the 'future' was suddenly your 'present.' That is to say, what if you suddenly realized that you would not live to graduate your kids and then 'do life' as a 50-80 year old? So let's bring it home: if you knew you would not live more than, say, 10 more years - a single decade, what would you do differently that you aren't (or are) doing now? What would you change about your family life or your work load or your spiritual life - or your spiritual journey? Could you say with full conviction and follow it up with your actions that Jesus "is the Christ, the Son of the Living God"? Or that you know Jesus died to be your Savior - to save you...from yourself, really - from your 'sinful' bent, specifically.

OK, move out of that aspect: would you travel more? Talk more... or less? Read more, or be an advocate for someone or something? Work less, take your kids out of school more? Give more away, or take up something? Take things more seriously or maybe less seriously? Would you pursue that which makes you happy or strive to improve someone else's life? What would you want to accomplish in 10 years? Do you need to accomplish anything? Would whatever you accomplish be tangible or intangible? What do you want to pass along in the next 10 years? Does it all match up with what Christ has for you?

How about this: name some thing that you'd like to have identified with your life. A butterfly that only lives a short time but is appreciated by so many for its beauty? A rock that is never changing and is solid to then end. A rubberband that adjust itself for anything. What about a video camera that doesn't miss a thing. A firework. A medication. A lamp. A lotion. If there was something in this world that you would want people to identify with you, what would it be, and why? What would God create you to be or change you to become? Jesus talked about us being salt. Hmmm.

Strange questions, I know, but I'm realizing that we cannot assume that we'll all live to our 80's or longer (duh!) no matter what our current, wonderful status is right at the moment. We cannot assume that the families we are building will remain indefinitely. Given this knowledge, what might change about how we live our lives? What would it look like to completely surrender to God's will? It's exciting to think that if I were to surrender to God's will completely and entirely I may not even recognize myself! That's the beauty and the freaky thing about it...I have ideas about what I want to do and become, but God's got so much more in store for me if I would just get out of the way!

God, move me out that I may become your creation not some lesser thing of my own design.
Hmmm. What exactly does that look like - and how does that work, exactly?

Last of chemo, Disney, and Radiation

Ahh, back home from lovely Florida -- or more specifically, Disney. It seems to be an entity unto itself! We had a blast, but by about 1/2 way through our littlest ones were saying, "I don't want to go to Disney anymore!!" So we told them we were going to the zoo, aka Animal Kingdom. It seemed to work for Levi! I could go on and on about how much fun it was, but if you've been there, you know all that and if you haven't...well, you've probably heard a million people say how great it is, yes!? The nice part is that it's nothing like the usual amusement parks like any Six Flags or Cedar Point. It's much more experiential and (don't tell the kids) occasionally educational. They actually try to teach you something sometimes. Granted, I don't agree with Disney's philosophy on lots of issues, but the education I'm referring to is more about conservation issues - though again, it seems to be a meca for plastic and energy consumption. But I've learned they're at least 'trying' (in some respects) to be considerate of earth's resources.

As far as my treatments, I'm working out the last of the chemo issues - and it's not so pretty. My fingernails have finally 'bit it.' They kept saying that my nails would get nasty, and in the scheme of things, it's not really that bad, but my hands look like a construction workers. No offense to my hard working construction folks, but it's not very lady-like to have peeling, splitting ugly fingertips! What's happened is that the nail bed has dried up and separated from the nail itself. Very odd. One thumb nail has actually peeled off...from the bottom up. And a few others have disconnected at the top. Sigh. Could be worse!

Another strange issue I'm working though is sore muscles. I've got tremendous knots in my arms, which is nice for that bulky, I've-been-exercising look, but it's not very comfortable. And if my soreness is from vacuuming or cleaning a bathroom, that's kinda unusual also. Dehydration? Too much tension?? Who knows. I've made it my job this week to sleep and drink water/Propel. Not bad! It's not necessarily fixing the muscle thing, but making me feel better none-the-less.

And now...radiation. I went on the 25th or so of Feb. for 'mapping' which got me set up for the actual treatments. They had me lay on a foam or something in the position needed for treatments (arms overhead w/ head to one side) and then added a chemical into a bag around the foam in order to make an impression of my upper body. This hardened and is what I use to lay on during treatments. They also added three small tattoos (one under each arm and another over my sternum) which are 'landmarks' to help w/ positioning. Obviously positioning is critical in all this. Wouldn't want to zap the wrong thing!

While we were at Disney, the Dr. used a CT scan they did at the mapping to identify the angles and whatnot for the treatment. At my "first" appointment this week Wednesday they took some x-rays to see if I was in a good...you got it...position (where's Ms. Dale, my HS English teacher and her cursed thesaurus!) and then a dry-run of treatment for the doc to check. That turned out fine so they did the actual first treatment. Treatment itself takes less than five minutes.

They said as far as side-effects, the biggest is dry, irritated skin -- think sunburn. And fatigue. This all happens in about the 2nd or 3rd week. So far, after treatments 1 & 2 I did done nothing but sleep. Today was better, so I'm thinking that was simply recovery time from moving and traveling. Noah came home Wednesday and asked, "Can you move??" My answer, "Yes, but I don't want to." Noah: "Sweet! I get to make dinner. I'll start a movie, too!" That's my boy! I think he thought I'd be down for the count until the end of April. Sorry, Buddy!

Radiation treatments are every day M-F for 33 'sessions' or until the end of April.