Sunday, June 26, 2011

Chasing a Unicorn Named Closure

It’s been more than a year since I have been here to write about my experience with breast cancer. I think the time elapsed originally like it does when you really mean to call an old friend, but just can’t find the right time because it occurs to you at midnight and you certainly can’t call then. So time just gets away from you…next thing you know, it’s been a year.

That’s one reason. The other is so much harder to explain. I think that as you struggle through the physical battle of chemo and all of the expected and non-expected side effects, you have so much on your plate just trying to survive that there’s no time or energy to think about what comes next. For once in my life, I was truly living in the present. You have to in order to survive. But, then…

Chemo was over. I felt like I should be better a little bit every day. And it did get better, of course not at the rate I expected. (Patience is a virtue that continues to elude me.) Chemo wasn’t the end though. I still went to the infusion center every three weeks through the end of August to get hooked up for my targeted therapy. Targeted therapy is “Chemo Light”. The worst of the side effects diminish, but the promise of no effects never materialized. I had my last treatment on August 27th, Brayden’s 6th birthday. And then it was over. No fanfare or celebration, just the knowledge that I wouldn’t be doing it again. So I left, drove home, and began the wait to be “normal” again.

My hair was supposed to start coming back right after “bad chemo” ended and targeted therapy was still going on. I was told that targeted therapy would not prevent my hair from coming back. That didn’t exactly go down like it should have. I did get sprigs of hair, but the coverage never materialized. I had a great “Terry Bradshaw” look. (That’s hair just around the edges.) But, I just couldn’t seem to grow it back on top. My doctors didn’t expect this. They were a little stupefied by it. So, I started digging. Come to find out, the study drug, Avastin, does have a very rare side effect called “hair regrowth retardation”. It occurs so rarely in the population of patients that I’m practically a lotto winner, a lotto winner of a giant booby prize. (Disclaimer: Size of booby prize has no relation to size of boobies.) My hair is coming back now, but not very quickly. I’m a long way off from showing the world my head. Time will tell. I got a bit more hope today when I met a lady at church that said her hair took 3 years to come back. If that’s the case, I could be 2/3 of the way there.

Next week will be my 2 year survivor anniversary. That’s hard to believe. When all of this started I thought by now that it would be a memory like other difficult things I’ve long since forgotten about. Then, I spent the last year searching for a unicorn named closure. Like that unicorn, closure from this cancer just doesn’t exist. Like it or not, I am permanently changed physically, mentally, and spiritually. And oddly enough, that’s actually a beautiful thing.

Monday, May 31, 2010

Bill & Brayden

Very rarely do I see a photo that has the power to affect me in the way that this one has. I can't tell you how many times I have pulled it up on my phone since I opened it just before church started on Sunday. I cried through the whole service. Brayden went with his dad to see his Granddad's grave on Saturday at the Dallas-Fort Worth Memorial Cemetery. I wasn't there, but he snapped this shot as Brayden placed the little flag at the top of Bill's headstone. I've probably cried more this weekend about losing him than I have since the night it happened.

They say a picture is worth a thousand words, but that's really inaccurate in this case. It's so many more. There's all of the words that make up the story of a man who served his country in both Korea and Vietnam. Losing friends in unspeakable ways mere feet from where he sat. As bad as the stories we know are, I can't help but wonder how many of them were too horriffic to share. Despite the experiences, he came home to love his wife for more than 38 years and his only son for most of those, too. I never knew Bill as the military man. The man that I knew was just a hard working and kind father and husband.

I wish he could see Brayden now. He would be so proud. He loved that boy with such urgency. From the moment he was born until just before his sudden death, he had a one track mind. Time with Brayden was the priority. They had a standing date each Tuesday and whenever possible in between. If there were other people in the room, he'd never have known it. It was as if he squeezed a lifetime of love into one short year. Like he knew there was little time left...

This weekend was the first time that Brayden was old enough to tell all about his granddad. Before his dad came to get him, Mom and I told him all about Bill and how much he loved him. We talked about what a hero he was for serving our country like he did, and why we have Memorial Day. And, Mom also told him about the last time he saw his Granddad. You see, he was the last of us to see him.

Bill had been recovering from a triple bypass surgery and was doing great. So great that he was going to go home the next day. But, that didn't happen. Sometime that afternoon unbeknownst to the doctors or anyone else, a bloodclot had formed, escaped, and traveled to his abdomen. He looked fine, felt fine, and everything was proceeding normally...until it wasn't. Once they figured out what had happened, they rushed him into surgery to try and repair the damage, but one look told them the window on saving his life had passed. They closed the incision and said he wouldn't make it through the night.

I was on my way home from work when Bird called that night. I couldn't make sense of what he was telling me. I had just talked to Bill the day before! The doctors said everything would be fine. How can this be happening?? How can this be happening?? The world seemed to be spinning off of its axis. I just couldn't sort it out and was in no condition to drive when I arrived at Mom's. Recognizing it immediately, she threw both Brayden and me in the car and sped off to the hospital.

I can't describe the next few hours well. It was terrible. I'm thankful that I had the time to talk to him, tell him how much I loved him, but I could never wish the trauma of that night on anyone. We watched the machines, too many machines...we watched as they beeped slower and the numbers were reduced with each passing hour. Finally, the doctor came in to tell us it wouldn't be long.

At that point, Mom took Brayden down to the lobby to wait. She didn't want to intrude on the moment with the baby. Besides, the lobby was big and quiet and he'd be fine down there under the big open ceiling with an indoor kiddie playground.

I told Bill that we'd take care of Brayden. Whether he could hear me or not, I wanted him to know. Everyone had the opportunity to tell him what they needed him to know. When the lines went flat, they came in and unplugged everything while we wept. The neighbor decided to go down and let Mom know he was gone.

When he arrived, Mom already knew. Mom said they were just playing around when all of a sudden Brayden looked up, smiled and began to wave just like he would when Bill came to see him. His eyes tracked from the back of the building to right out the front door as he smiled and waved. The hair stood up on her neck because there was no one else there besides the two of them. It seems, he loved Brayden so much that he came by on his way out to say goodbye one last time.

So on this Memorial Day as I look at the photo, I see so many things. I see my boy paying tribute to his Granddad. I see the memory of a patriot. I see the resting place of a man we all loved. And, I can't help but see a private moment between Bill and Brayden like no one else was around...just like it used to be.

Sunday, May 23, 2010

Stolen Blessings

One of the biggest lessons that I have learned in this experience has been to let people help me when I need it, even if I don't know that I do. I have a friend that is battling stage four cancer. Like me, she's a single mom. A couple of the differences are that she's in her third battle with a devastating form of the disease and she's the mother of three. It's heartbreaking and so many people want to do something to help. When I visited her recently, I sensed the hesitation she had when I started to try and nail down what we could do to help them. Now, I also had my friend Susan with me on that visit and that meant that I had to make a quick decision about a story that I thought would help her let us do something. But, it also meant coming clean. You see, the story involves Susan as a main character, but I hadn't ever told her the story either. I tell it now because I know it can help others let people help them, too.

Well first of all, there's a couple things that you need to know. I'm not proud of this, but it's none the less true. Once upon a time, I really wasn't very nice, tended to be primarily negative, and that attitude extended to just about everything...including Christmas lights. I remember driving around, not as a child but as a younger adult, to look at lights. I also remember multiple years that the "hunt" for good lights was unsuccessful.

You see, there were rigid requirements for the lights to be "good". They must only use white lights and they had to be the miniature kind, none of those big ones that we had when I was little. They also had to be hung completely tight so that they formed a perfect line, never one out of place. Lighted wreaths and garland were good as long as they were natural looking green and had red bows. Things in the yard were OK if they all matched, weren't too junky, and included a clearly demonstrated theme. Also, anything that blinked ruined the whole thing even if the house had qualified in every other way.

On the other hand, when I drove by a house that had those multi-color lights hung a little askew, some blinking and some not, I was horrified. "Who lives there? Aren't they embarrassed? Why bother?" I remember actually saying that out loud as if I were the Scrooge of Christmas lights critics. I now know exactly how ridiculous and awful this sounds, but truthfully even as Christmas approached last year I still had my preferences. I didn't have the same bad attitude about it, but the standards had been set long ago...

So, I picked Brayden up from Mom's on a Monday in early December after my 4th round of chemo. We were making the normal drive home when he asked, "Mommy can we have Christmas lights on our house? I really, really want them!" I still wasn't sure whether or not I could even put up a tree as bad as I was feeling. I knew for a FACT that we weren't going to have lights on the house. So, I said what moms say when the answer is "Not now or maybe ever" but we aren't up to the battle or willing to disappoint..."Not this year Brayden, but someday..."

That was the end of that...until Friday. So, we're home that Friday about 8:00, I think. The phone rings and it's Susan. She sounded excited, "Hey, the kids and I want to come over to your house and put up lights! It will be fun and Brayden can help!" Truthfully, I was instantly regretful that I picked up the phone. I wanted to say no simply because of how bad I felt after another week at work while living through chemo, but I could hear the excitement in her voice. "You don't have to do anything. Stay in bed! We'll show you when we're done," she continued.

"What kind of lights? What color?" I asked. Excitedly she added, "All kinds of colors!" I tried to dissuade her, but she was pretty set on doing this for me. I had a decision to mind flashed back to a class I took at church more than a year before. In that class, we had been taught that saying "no" when someone wanted to bless you was actually a theft of their blessing. I knew it was true because I knew how much I was blessed when I had the opportunity to do things for others. The giver with the right heart always get the bigger blessing of the two. So, was I going to steal her blessing along with a great lesson on "do unto others" from her kids, and what Brayden wanted most for Christmas in one fell swoop?

I wanted to, don't get me wrong. I really, really wanted to. I added up what we were talking about in my head...multi-colored lights(probably blinking no less)...hung by one woman and 3 kids...after 8:00 PM in December when it's pitch black outside. My worst Christmas nightmare coming to life...But, I'm no thief. So, I uttered a hesitant "yes." They arrived, got Brayden outside to help, and I went back to bed worried about the result. Two hours later, they came to get me for the big reveal. What was I going to say??

They walked me outside with my eyes closed to the sidewalk and turned me around. There they were multi-colored and loosely hung, complete with the string blinking from roof line to the electrical outlet near the porch. I could see the reflection of the lights as I looked at the excited faces and my heart just melted. Pure joy poured from Brayden's face. And you know what? Something in me changed in that moment because they were suddenly the most beautiful lights that I had ever seen. And because I said yes, we had all been blessed. So, who lives in those houses with loosely hung, multi-colored, partially blinking lights?? I do.

Saturday, May 22, 2010

Gaining Perspective & Giving Thanks

It's been so long since I came here to write anything, I can't believe it. So, long that I had forgotten what I last wrote. I have to admit that as I just looked over the last couple of entries, I contemplated taking one of them down. "Angry" was entirely too angry! I was a little shocked and quite embarrassed at how self-centered it sounded. I guess that's because it was. It's amazing how wide the swings can be in emotions. I ended up leaving it because regardless how it sounds, it was true at that moment in time. I began this blog to capture the truth about this journey and it isn't always pretty. What's weird about it all is that you just can't tell which events are going to trigger the worst reactions. Lost the breasts, no problem. Lost the hair, much more of a problem. Eyelashes and Nails, complete meltdown. Really?? Like chemo, the effects of the experience are cumulative, I guess.

Anyway, things have changed dramatically over the last 2 months. I am doing SO much better, physically and mentally. I now have eyebrows again! I also have very short (but none the less present) eyelashes, and 9 healthy nails! Today I went to get them done for the third time since the day everything hit the fan and was so pleased that my entire right hand looks normal again. One of my nails on the left hand broke last night down to about 1/4 of an inch. It's the only bad one I have left. Lynn managed to make a short temporary nail. So, it looks OK and will only get better. I am so thankful that she has walked me through this time. I even got my eyebrows waxed today to clean up the edges. If you had told me a year ago that I would celebrate an eyebrow waxing and nail appointment, I would have thought that you were nuts.

I am also so thankful that I have kicked the fatigue that was so debilitating. I have been getting better for some time, but realized last week that I no longer even think about the walk from the car to the door at work. Even when I began to do it again, it was a little difficult. But, not any more. For that I am so thankful.

I am having some new side effects from the Herceptin, but it is nothing compared to the ones that are behind me. It's causing very stiff joints and deep aches when I wake up in the mornings and after any time in one spot. I kind of look like a little old lady when I get up from my desk at work, but have walked it out by the time I get 1/2 way down the hall. In the mornings, my shower fixes the problem in under 10 minutes. So as I said, it really is nothing compared to what I have already experienced. Besides, Herceptin's biggest side effect is heart damage, and I have none of that. Instead, I have had 3 clear echos. Again, very very thankful...

I also now have most of a very short "boy" haircut looking fuzz that covers my head. I don't know how this is going to go, but it's just a matter of time before I decide that I can't stand the heat and the long beautiful wig. Vanity doesn't matter at all when it's 110 degrees and your hormones are still absent or completely out of whack, whatever the case may be. I have already removed it at work in meetings with my closest teammates. Thankfully, they are very understanding. I am also thankful for them and how well my company has treated me during this whole illness. So many people have a different experience.

I think it's just a matter of perspective. I have mine back and for that, I am grateful. I've also forgiven myself for losing it temporarily. No more looking back. It's time to see what's ahead.

Monday, March 22, 2010

Destination "NORMAL"

Last time I was here, I was pretty angry. Angry enough to title my entry as such, but that subsided as soon as I finished typing. From that point, it became necessary to figure out exactly how I am going to deal with all of the latest developments. Anger is always a flashover for me. It happens fast and it’s really hot, but wanes as fast as it arrives. Thankfully, I just don’t stay angry. So, I decided to do something about it, to the best of my ability. I made a phone call, and went that evening to my nail lady, Lynn, to see if she could help. Turns out, she can. We’ve established a plan and sufficient camo for my nails as long as they don’t get much worse. We will see. She’s a miracle worker so far. But, I now have 6 of 10 that have been affected to one degree or another. So, I don’t yet know what the outcome is going to be or how long I can mask it.

As for the rest of the physical changes, well they’ve become quite the pain. Originally there was some time advantage to losing my hair. I can do my hair in the evenings, put it on the stand on the dresser and slap it on in the morning. Sounds like a time saver. That is until the brows and lashes go…

Now, I spend 30-45 minutes a day trying to glue and paint on the hair that is supposed to be there. Since I have 1 hair left in my left eyebrow and only a few on the right, it takes quite a long time to recreate them in a realistic manner. The goal is that no on notices the difference. I can achieve that, but it takes time! One wrong stroke and you can look pretty weird. I certainly don’t want to look surprised all of the time or like I’m glaring at everyone. They can’t be too long, too short, too fat, or too slim. “Too” anything is a definite problem. Dr Seuss could write a book...

It’s also very important that I take my brow kit with me when I go to work or anywhere else. I learned this the hard way. It’s pretty funny really. I was in a meeting with one of my co-workers not that long ago and got an itch on my forehead. So, I scratched it. No big deal, right? Wrong!! I forgot that one good momentary swipe could remove 10-15 minutes of work and a brow.

He looked up from the document we had been working on with a strange look about the same time I noticed all of the brown stuff on my hand. Being tragically shy like I am, I said, “Crap! There goes my eyebrow! Can you tell?” Talk about taking a meeting off task…I don’t think he looked up from the document another single time for the duration of the meeting. I had to chuckle. If all of these things weren’t happening to me, I’d probably be uncomfortable, too. But, they are happening to me so I get to laugh at other people’s discomfort. It’s pretty funny.

Turns out, the answer to my question was YES! you could tell, although he was too polite to say so. I walked around the rest of the day with a left eye brow that was about an inch long because I didn’t have “the kit” with me. So I have learned that with cancer, the brow kit is like American Express. Don’t leave home without it!

So, about the eyelashes. Here’s a bullet that I thought I dodged because chemo has been over since January and I still had enough lashes to look normal. That was until the week before last…Now I don’t. I have none on the bottom and what I can only describe as several on each top lid. That’s more than 3, but less than 10. It’s a pitiful state of affairs.

I’ve seen people that lose them and you just can’t really tell the difference. I’m not one of those people. Without my eyelashes, my eyes disappear. So, I am getting used to gluing them on.

I found some that look almost exactly like my real ones. So, they look good as long as they stay on, that is. I haven’t quite mastered the exact science of how much glue is enough. I have one more than half hanging off my face by the end of the day about 30-40% of the time. On those days I have underestimated. Last week I overestimated. I had glue all over me, the bathroom counter, the eyelashes, my eyelid, just about everywhere.

It’s tricky stuff! It doesn’t set up right away. You have to apply it, wait for about 2-3 minutes and then try to stick them on. The “wait 30 seconds” recommendation on the box of glue is a gross underestimation. If you do it too soon, they won’t stick. You just get glue everywhere. Then when it sets up, whatever has glue on it gets glued to something. I have glued my eye shut. I have glued my eye open. I have glued my fingers to the lashes and to the eye. There are any number of ways you can get it wrong. I’ve accomplished all of the ones I can think of so far. But, then there’s always tomorrow… The funny part is that I make all of this effort each day to look normal. That’s such a low standard! I’m not trying to look “the best” or to stand out in some way, just achieve normal.

The irony of that hit my while my finger was glued to my eye the other day. How many people do I pass each day that are doing the same thing for far less obvious reasons? How many people do I encounter each day that are putting on a good face, but are so broken inside? They look normal, but are one small disaster away from giving up. People that are one more late payment away from homelessness, or one broken relationship away from feeling complete rejection. Their troubles are so much greater than mine. Do they know that there’s actually a place of unconditional love? Do they know how much has been given for them already? If they don’t, I hope that one day I will have the chance to tell them. I think it was Mother Theresa that said, “You don’t know Jesus is all you need until he’s all you have.” For me, that required many wasted years and a little cancer. But that’s ok. The lesson was well worth the price.

Thursday, March 4, 2010


There have been very few times that I have been truly angry during this cancer battle. I’ve been scared, hurt, sick, despondent, and probably a few other things during this time, but real red-hot anger hasn’t been one of them. Angry is actually too reserved of a word for what I am feeling. I’m pissed, plain, undiluted, flat-out PISSED!! (I know that is a “bad” word, Mom. But, if I typed what was really running through my head it would be so much worse.) I may be forgiven, but I’m certainly not cured of my human condition.

I just don’t understand. No one prepared me for this. How far does it have to go? What lesson have I not already learned? Exactly how vain WAS I that deems this necessary? I just don’t get it. What else???

That’s a question that I don’t usually ask. In fact, just the sound of it coming out of the mouth of someone else puts fear in my heart for them. But, I ask it today because I just don’t think there’s anything left. Even as I type this I feel sick from asking. But would any of you feel any different? If so, help me understand. Believe me, I NEED the help. Let’s just go down the list of ways this stupid cancer have stripped and stolen from me…

First, there’s the hair. Every woman who gets cancer fears it, most deal with it. Heavens knows that I have spent enough time here talking/whining about it. So, why stop now?

I realized yesterday that even though I finished chemo on January 8th, the effects on my body continue to worsen in some ways. After I got out of the shower last night I was looking in the mirror to remove eye make-up and noticed that I have now lost all but 1 hair of my left eyebrow. ONE hair! My right has a few, some of which need to be plucked. You see, the good ones keep falling out, but some of the bad ones have decided to make a return. I plucked a lone black hair out of my chin this morning, too. Really??? Are you kidding me? It wasn’t there yesterday…how did it grow an inch long overnight when I have just 1 eyebrow hair?? What, did you lose your way? Take a right when you should have taken a left at the nose or something? How can this be?

I thought I dodged the eyelash loss also, but no. Every round of chemo has taken some eyelashes with it. Until now, it was OK because I usually have so many. After I had lost half of them, I still had more than a lot of people. Eyelashes, long beautiful ones, have always been something that I took for granted. Lesson learned. Check that off the list. Last night I also realized that there were huge whole bald spots where my lashes used to be. After my shower this morning there were even fewer. I have two ¼ inch clumps on each eye left. So, this weekend I get to figure out how to apply the fake ones of those. That should be fun.

The irony of it is that as the “good” hair continues to fall out, the “bad” had returned. If you have no hair on your head, no eyebrows, no eyelashes to speak of, you should not have to shave your pits and legs! How ironic is that? Someone should call Alanis Morisette…she could write another verse to her old song.

Another lovely physical price of my treatment has been weight gain. Yeah, I said GAIN. If one more person asks me why I haven’t lost weight from cancer, I might just lash out and gut them. Now granted, I didn’t know breast cancer treatment made you gain weight either. But, I never would have said anything to someone fighting cancer about their weight. You’d be amazed at how many people do. If you’re lucky and contracted just the right kind of breast cancer, you can gain all kinds of weight. I’ve been fortunate enough to gain 30 pounds from it. No exaggeration. 30 freaking pounds! I visit all of my size 6 clothes each morning in the closet as I stuff my butt in ever shrinking 12’s.

This is particularly frustrating because I worked so hard to get the weight off after having Brayden. It took more than 8 months (once I started 18 months after his birth) to lose 68 pounds. I was thinner than I have ever been in my life and felt really good about the way that I looked. I kept it off for a long time, too! But, that all went out the window with the diagnosis. In the beginning you “treat” yourself to whatever you want because you have cancer. Then, the steroids begin their work. Then, the chemo starts its thing….next thing you know you’re fat. Only this time, it’s worse because you are also bald. Oh, and there’s that little thing about removing your breasts…because that makes you feel so good about yourself! When you remove body parts you should weigh less, not more!

Let’s add that up….no hair, no eyebrows, no eyelashes, and no breasts. Then the straw that broke the camel’s back, I’m losing my fingernails. This morning two of them turned loose almost all of the way back. It’s a side effect of my Taxotere. I knew “nail changes” were possible, but didn’t know that included LOSS. So, I have 8 that still look OK. But, 3 days ago they all looked OK. Only 22% of the time people experience nail changes. Way to miss the good 78%! Besides, I thought changes were lines, discoloration, etc. Not LOSS!

Anyway, it all adds up to me being incredibly angry. I know that this experience has permanently changed me. How could it not? I’ve never been in denial about that. I guess the anger comes from the fact that I thought I was on the upswing. I thought that the bad stuff was basically over. I thought that it was all uphill from here. I thought a lot of things. But, they were not to be.

Thursday, February 25, 2010

The Business of "Becoming"

Becoming who we are supposed to be ought to be easier it seems. Maybe it would have been if I had started earlier. But, for whatever reason, that’s not the plan. Besides, I wouldn’t be who I am without all of those years of “experience”. Most of the time, I believe that. Some days I think it’s just what we tell ourselves so that we can deal with all of the wasted time.

Either way, I had a wonderful revelation last week and I thought it was worthy of sharing in case someone else was in the “are we there yet?” mode of personal development. At our leadership conference at church last week we had the opportunity to hear from our pastor’s father. He’s a wonderful pastor himself. Dr Young is quite different from his son, but they are both master communicators. He spoke on our need to get focused on “becoming” instead of so much doing. In other words, once we become who we are supposed to be, the “doing” will take care of itself as the fruit that bears witness to the work God has done in our lives. I had never thought about this in exactly this way.

The example that he used to explain is one I love to examine. He used Paul. I love Paul’s story. He’s one of my very favorite characters of the Bible. How could you not love Paul’s story? Most of us love a good redemption story, and there is none better than Paul’s. Here’s a guy who actually persecuted/murdered Christians until the day that he was on his way to Damascus and Jesus appeared to him. He was blinded for 3 days, regained his sight, converted in a BIG way, and then eventually went on to write over half of the New Testament. Even Hollywood couldn’t think up a redemption story like that!

But, it wasn’t those events of his life that were news to me. The “a-ha” moment came in what isn’t included in the story that I’ve known for years. You see, apparently Paul failed miserably in converting other people immediately following his conversion. He was on fire, but very ineffective. Somehow I missed that part of the story. Turns out that somewhere between 13 and 18 years passed before that changed. That’s a lot of years!!

So, there were all of those years of preparation and development before he was ready to be used in the most incredible way. Even Paul had to “become” before he could do what he was created to do. Now, I have no misconception that my plan is a fraction of the plan that God had for Paul. I mean he brought the Gospel to the western world for goodness sakes. But the truth is that I don’t know what it is yet. I’m still in preparation mode.

My pastor says regularly that whatever we are going through, God is preparing us for what he has already prepared for us. Isn’t that cool? I’m like a child waiting for Christmas morning knowing the gift is so much better than anything I could ever imagine. So now I want to be about the business of “becoming” so that I can find out exactly what that is. I don’t know where it will take me or who I will encounter along the way, but I do know that I will be pleasantly surprised. I always am.

©2009 80% Sporadic | by TNB