Monday, May 31, 2010

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.

Thursday, May 6, 2010

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!