Phantom Pain

I've been thinking a lot about "phantom pain" lately. It intrigues me. The Mayo clinic defines it this way: "Phantom pain is pain that feels like it's coming from a body part that's no longer there. Doctors once believed this post-amputation phenomenon was a psychological problem, but experts now recognize that these sensations originate in the spinal cord and brain."

If you think about it, your brain has been wired since birth. It's the message-center. Imagine how many messages your brain sends to your body parts on any given day, without you even THINKING about it. Truly, we are fearfully and wonderfully made.

I have sensation two inches out from my chest. Two inches out, there is nothing. Zippo. Nada. Now, we all know that something does not have to be present to cause pain, but seriously, this is WEIRD!

My Dad died 13 years ago. Prostate cancer cut him from my life when he was only 65 and I was 38. And yet, there are days when I honestly think, "Oh, Dad will love to hear that story!" And I almost head to the phone to call him. It's phantom pain! I was so used to sharing joys and stories and laughter with him...it was wired into me after 38 years of being his daughter.

My life has changed in big ways this year. That breast cancer and a mastectomy was a part of it all has given me much opportunity to consider symbolism. Cancer invaded me. It was found. It was dealt with. I am forever changed by it. Is that a bad thing? Believing as I do in a Good God, I am going to say NO. It is not a bad thing.

Phantom pain is a reminder. It reminds me of what was, and what is no longer. By God's grace, I will be a more compassionate, kinder person because of this reminder.

True Confession

So, I have this "thing." When I put my mind to doing something, I want to do it WELL. Am I a perfectionist? Maybe. An over-achiever? Probably. Full of pride? Definitely.

When this whole cancer thing happened, right on the tails of some other big, challengy things, my first thought was "I want to ROCK cancer." I desperately wanted to be good at it...to show the world how cancer should be done. Though I am an introvert, I actually wanted to be the Breast Cancer Poster Child.

Well, here's the thing. God had other plans. He is in the business of sanctification. This means He is constantly seeking to free me from the sin that so easily entangles. (Hebrews 12:1) Pride is a very tangly sin. It is easily excusable by the world's standards. (We SHOULD want to be good at all we do, right? Isn't that a good thing?)

I was left, in the stillness of recovery nights, asking myself, "Christie: WHY is it so important to you that you rock cancer?" There were many answers, believe me. I think the one shining in neon was: "I want to rock cancer so that people can see how STRONG I am." Now, if you know me, you know that I really DO want to glorify God. I love bringing Him glory, I really do. But in this cancer thing, I wanted some glory, too. True to His character, God had different plans than I. He threw in this side order of blood clots and a dollop of drain-issues as a tool to humble me, again, into dependence on Him.

I love that God is committed to sanctifying His people. I love being reminded that He is God and I am me. If you notice me vying for the Poster Child status, feel free to do that little cough-cough-pride-cough-cough thing. I'll get the hint. Hopefully.

By My Side

Let me introduce you to three amigas. There have been LOTS of women who have stepped in and stepped up to make this craziness bearable.These three have gone above and beyond the call of duty. On the left is Gayleen. She spent that first night with me at the hospital. She also spent the first couple nights at home with me, getting up in the night for potty breaks and to administer meds. She has a heart of gold. And now she is teaching me how to get my range of motion back. I value her more than words can say.

In the middle is Posse Girl Dawn. She flew all the way from Minnesota to care for me. She was there on day 3 when I tanked. She sweated while helping me put on my compression tights (another blog...be prepared!). She cleaned my house and fed my cat. She showed great patience, actually all summer long. We have logged approximately 469 phone hours in the last three months. I love her.

On the right is LorieAnn. She has accompanied me to many doctor visits, waited many hours in waiting rooms. She was there for the ultrasound as well as the MRI-guided biopsy. She watched the drains getting pulled out of me and has beheld Dr. F in action, pulling excess fluid out of my side. We have laughed together in the worst of times. She is a good shot-giver and she reminds me to not forsake the emotional healing that needs to take place. Her friendship is priceless.

These three women represent a total of 35 years of relationship. We have poured into each other's lives in deep and meaningful ways. They have lifted me up from the depths, and I will always be grateful. I only hope I can be as good a friend as they have been should the opportunity arise. Thank you, Gayleen, Dawn and Lorie. Your selflessness humbles me.

Pool Party!

I'm on day 14 of post-op fun-n-games. I decided it's time to get in the water! Dr. F okayed this. In fact, he said, "the sooner, the better." Getting my arms moving increases the flow of good fluids (like lymph) as well as bad fluids (like the stuff I've been getting drained out of me by Dr. F). So, before my next (and maybe last) visit to the doc on Friday, I'm gonna stimulate this stuff as best I can. Anyway, it was SO good to get in the water. One of my posse-girls, Gayleen, is actually a pool therapist, and she helped me tremendously in figuring out which muscles needed exercising and how best to do it. I found that there are stretches I can do in the water that are impossible on land. For instance, I cannot lay flat on my stomach at home, but I can do that in the water. If you are recovering from a mastectomy, I recommend you ask your doc about getting in the water.
P.S. Does this bathing suit make me look flat?

A Part of the Picture

Hi! Sorry it's been a while. I'm actually doing great. I walked up to our church's Harvest Party earlier today and saw some of my precious preschoolers. It was good to reconnect. One mom told me how very worried her child was...tears, etc. Though I do not like the thought of children crying, this compassion warmed my heart.

Anyway, in the coming days, I am going to share some of the different parts to the picture I am living in now. Put together, they'll give you a good idea of MY cancer experience. This post is a tad graphic, so be warned!

Above is a picture of my "going home" outfit when I left the hospital. It's called a "mastectomy cami." Those bottles hanging down are the drains. When this picture was taken, those drains were still connected to me. I am standing just to the right of the picture. One drain tube entered my right side, one, my left. The fancy cami has "hidden" pockets into which these drain bottles fit. Every 8 hours or so, these drains were emptied by my faithful posse. The "contents" were measured and recorded, noting amount and color. (Makes you wanna think twice before offering to help a newly mastectomied person, doesn't it?)

On the Monday after surgery, I had these drains removed. I was dreading this procedure, mostly because Dr. F had told me point-blank: IT HURTS. Plus also, there was no offer of anesthesia, local or otherwise. Rats! So, here's the scene...me, laying on a table. Posse-girl Dawn holding my hand, eyes closed; Posse-girl Lorie standing by my side, watching for details. Dr. F removes the stitch which was holding the drain in place and like a master gardener starting a lawn mower, pulls that bad boy out of my right side. TEN INCHES of tubing was snaked inside of me, people! TEN! It felt so nasty and it hurt like a...lot. But then, just as Dr. F had promised, relief! But then? Dread. There was another drain. He repeated the above and I was FREE! I wanted to hug him. (This wasn't the first time).

The drains were not my favorite. Sleeping, showering, etc. with drains in you is...awkward. I am so happy that they are out. BUT here's the thing. All that "stuff" that was draining into those bottles is now draining into ME! So, Friday I went back to Dr. F's office and he, with a syringe, removed about a half-a-cup of Christie-fluid from my left side. Thankfully, this was painless, since I am still completely numb there.

So, there's the drain part of the picture. Sorry if you got more information than you bargained for. More tomorrow! (Bet'cha can't wait, ha-ha!)

Good News. Bad News. Good News. Bad News. GOOD NEWS!

I posted about coming home Wednesday and how sweet it was to sleep in my own bed the 2nd night after surgery. It took some nest-making and my friend Gayleen was very patient in creating just the right spot. I slept well, albeit drug-induced. Apart from moments of searing, weird, hot-lava pain, it was a good night. Then came Thursday. I mostly stayed in bed, but did a couple little walkabouts inside my house. Gayleen helped me shower. At the risk of sounding weird, it was BLISS.

Friday, I crashed. In our family, we call them "episodes." At the end of the day, we concluded that my body had basically reached its limit of toxic pain meds. We cut the vicodin out and halved the oxycodone. It took a while, but what a difference! The tough part of this is that everyone (including the doc) tells you to stay ahead of the pain. They sent me home from the hospital with 2 meds and with instructions, which I followed to the "T." But most of Friday, I'd get up, feel tremendously dizzy, lay down, sweat and just barely stay conscious. It was very nearly a 9-1-1 kind of day.

Saturday was SO much better! I woke up feeling like a new woman. There were fewer drugs in my system, and it mattered. My brother Tim flew up from San Diego for the day and we had a wonderful visit. The picture at the top of this post is of when he refused to sit in the chair by the bed and had to actually climb in next to me. I love this man!

Sunday I woke up in the wee hours with serious leg pain. I could barely walk to the bathroom. My friend Dawn was staying with me at this point and she helped me in. By 6AM, I knew something was not quite right, so I called the on-call doc in my surgical group and he recommended that I head to the ER immediately. Dawn took me in the still-dark morning. They did an ultrasound on both legs and sure enough, each leg held a blood clot. I was given a shot in the belly of quick-working heparin as well as a coumadin tablet. We got home around 1PM. It was a long morning. Posse-friend LorieAnn stayed with me through this backward step and has been great about giving me shots. As it stands, I'll be getting these shots 2x/day through Wednesday (tomorrow). I'll have my coumadin level checked and see where we go from there. This was a discouraging day for me. I have never been on a drug longer than about 10 days. They're talking about 6 months on coumadin. But...blood clots can be serious, and I don't want to mess with it. I'll do what they say.

Monday! At 10:00 I had my appointment with Dr. F. It was good to see him on this side of surgery! The first thing he did was to remove the drains. I will post more about these drains, because they deserve their own post. Let me just say this: Getting them out was wonderful, awful, horrible, disgusting, and liberating. I was glad when it was over. Once the drains were removed, Dr. F sat and explained my pathology report to me. This was my moment of truth.

He explained that I had made the right choice. He said they found more pre-cancers than expected on one side, and that I have all but guaranteed that I will not get what I was gonna get. And then he told me the best news of all: NO FURTHER TREATMENT IS NECCESSARY! What music to my ears! Yes, I would have walked through the next door regardless of what it was. But this really was encouraging news! I left his office buoyant and ready for a nap!

Rejoice with me at this news! My friend LorieAnn reminded me that God would grant grace for whatever the news was. True. I had wrapped my head around the possibility of chemo. and I knew that God would be my Hand-Holder regardless. But I did have a tremendous sense of gratitude and relief upon hearing the news! More soon...

Bring a Pair, Say a Prayer

I had some girlfriends over today. It was self-serving.
I told them that since I am choosing not to have reconstructive surgery at this time, I needed their help in finding "replacements." (Or as my one friend calls them: "substitits.") So, their ticket in my door was to bring me a pair of something. Anything. (I, personally, am partial to pumpkins.)

I've learned that it's important to laugh. Tears are fine and they certainly serve their purpose. (Did you SEE that last Harry Potter movie?) But for the most part, I'd rather laugh.

And laugh we did! Among the "pairs" that I received were hand-crafted, double-D rice krispie treats, complete with chocolate kiss nipples...two VERY mighty, very "pendulous" summer squash...two brass knockers (get it?) and a pair of very red, very round tomato pincushions! (Have I mentioned that my friends are amazing AND creative?) We ate and chatted, laughed and prayed, and it was so perfect.

My sweet dad died from prostate cancer in 1998. One of his least favorite parts of having cancer was when people would look at him with what he called "cancer face." The look says it all: "Oh, you poor thing, I feel SO bad for you, it must be awful, how sad." Yeah, I don't like it either. So, next time you see me, wipe off the cancer face and picture me with pumpkins. Let's laugh together!

My Decision.

When you finish reading this post, you are officially current. I am writing today about what happened yesterday.

Disclaimer: This post is a little hard core.

Yesterday I met with Dr. F. It was a work day for me, so I had 12 4-year-olds to keep me busy until the appointment at 11:30. A dear friend took me. Actually, she not only took me, she went IN with me. (Cancer people: take someone IN with you---seriously--it matters!)

I just need to take a minute here to say how much I really LIKE Dr. F so much. I know I mentioned it in a previous post, but it warrants mentioning again. He pulled up a chair. He looked me AND my friend in the eye. He was kind, humble. He listened. He respected. He was honest. As one of the gals in his office said, "He is 'old school.'" Cancer people: it is important to LIKE your doctor. (Okay, I guess that goes for ALL people.)

Anyway...Dr. F re-explained what Dr. R had explained 10 days ago: the post-MRI-biopsy pathology report. He told me that the new, pre-cancer on the right could do one of two things: given two years, it could revert back to being normal cells. Or, it could become cancerous. He explained some other stuff about surgical biopsy vs. the biopsy I had and how the results could vary depending on the sample taken.

I then spoke. And here is what I said. (Not verbatim, but pretty-much)
"Dr. F. Here's what I've been thinking the last 10 days. There is breast cancer in my family. (maternal grandma). I have a definite cancer on one side and a pre-cancer on the other. I have seen enough in the last months to know that I NEVER want to do this again. I am thinking of a bilateral (double) mastectomy. This choice is consistent with who I am as a person." I then cast a sideways, affirmation-begging glance at my friend. She agreed with me. (Thanks, Rhonda!)

Dr. F responded in such a gracious way. He said something along the lines of YES, you can do that. That is a very valid option for you. In fact, if you were MY wife, I'd advise you do to do that, because I have a stable marriage, and I will love my wife whether she has breasts or not. It IS a more complicated surgery, but I'll do it.

So.

On Tuesday, October 18, 2011, I will have the ultimate "breast reduction surgery." I will undergo a bilateral (both boobs) mastectomy, under general anesthesia, spending at least one night in the hospital, hopefully being sent home the next day, on my son's 17th birthday.

That was yesterday. I am now 30 hours into this decision, and I feel good about it. It is drastic. I do not HAVE to have a bilateral mastectomy. Nope. I could choose a double-lumpectomy, 6 weeks of radiation and 5 years on tamoxifen. And then I'd be fearing every mammogram. I'd be constantly wondering if I was cancer-free. I would adopt a new normal in terms of my level of anxiety, which is really NOT who I am.

So. Who AM I?

I have had to ask myself this question many times in the last three months. And I won't go all into it here, but I will say that I am a person who values character and heart over looks and....boobs. As a person newly-single, if I were to, say, meet another man in 5 years, I would tell him up-front, "Hey, I have no boobs." And he could say, "No big deal...big or small, I like them all." And I would reply, "No. I have NO boobs." And then he'd know. Depending on his reaction, we'd BOTH know.

Who ELSE am I?

I am creative. That means a "new normal" is NOT beyond me.

Who else am I?

Really, first and foremost, I am a strong believer in Jesus Christ. This means that I have FAITH. Here's what that looks like in my situation: It means that I believe that God knew, on 3/7/60, when I was born, that this would happen on 10/18/11. And God has been preparing and equipping me ever since. "Stuff" has happened along the way that has strengthened me. Let's just say, God has "prepped me for surgery."

I am resilient. I have been through JUNK. I won't elaborate, since this is a breast cancer blog, but yeah. I am a strong person by nature. My Dad built me strong.

If you are a praying person, pray for me. My hope is that my children will not have anxiety about me. I do not want them to fear that I will die on the operating table. I do not want them to fear that I will be somehow "different" after having a mastectomy. Words cannot express what my kids mean to me. So I'll stop here and just ask for your prayers for them.

I will post again at least once before surgery.

Thanks for loving me and reading my blog.