Monday, April 26, 2010

Love Lessons (Re)Learned

It is true that in several ways this round of chemo hasn't been as bad as the first. I have had less nausea, fewer headaches, and not as many days curled up in bed. In other ways, it has been more difficult. The fatigue I feel is extreme. It has been difficult to find the right balance of food for my system. And the emotional strain is more. So much more.
I was surprised yesterday when I looked in the mirror and saw a sick person staring back at me. There was no trace of the old laughter, love, or life in my face. Instead, I saw baldness, weariness, and sadness. How did that happen so fast? How did cancer jump in and steal my joy when I wasn't looking?
While I was studying my pitiful reflection and wondering what happened to ME, something even more surprising happened. My husband walked in behind me and told me I was beautiful. He kissed my bald head. He wrapped me up in his strong arms--those arms that are carrying the weight of the world right now--and held me close. He said over and over again that he loves me, and that cancer will never change that.
This man promised nearly 12 years ago to love me, no matter what. He promised to give me the best of himself, in good times or in bad. He promised to help me and protect me, in sickness and in health.
He is a man of his word.
And you know what is really amazing? He tells me that he's a little bit glad we are facing this disease together, because cancer is teaching him what love really is.
We were so young when we got married! We were fresh-faced and ready to take on the world. Sometimes, I take inventory of our life: house in the suburbs, SUV with a soccer ball rolling around in the backseat, 3 noisy little boys, 3 pets. Long gone are the days of sipping wine during a leisure Friday night dinner, or taking a whole weekend to watch the Rocky marathon on HBO. No doubt that he loved me then. But now...there's a whole different element to us. We never could have imagined that the fire we would walk through would be this hot. One thing's for sure, though: there is no one else I would want walking by my side.
Babe, there are not words that would be adequate to express everything you are to me. How you manage to maneuver through each day and still be yourself is beyond me. I love the man that you always have been, but especially the man that you are right now. When I need you the most, you amaze me...over and over and over again. Thank you for taking out IV lines and dispensing medications. Thank you for working so hard and traveling when you have to, even though I know you dread it. Thank you for spending so much extra time with the boys and making them feel like all is right with the world because their daddy will take them fishing. Thank you for making me feel safe, and loved, and still pretty. Thank you for being who God made you to be: the perfect one for me. I love you.

Friday, April 23, 2010

Housekeeping, Home Health, and Hair

Today is Day #3 of Chemo #2. As I write this, I am propped up in bed, sucking on a watermelon-flavored Jolly Rancher (darn that metallic taste!). Without a doubt, this round of chemo recovery is going more smoothly than the first. I know that there are many prayer warriors who have asked this specific thing for me, and I am humbled and very aware that God is answering those prayers. Thank you, friends.

Chemo Day (Tuesday) was uneventful. It took one nurse one try to get an IV started. That alone was a vast improvement over last time! Hubby and Mom were with me the whole day. Three people in one small room for eight hours might seem a little claustrophobic, but there's no way I could make it through these treatment days without them! To pass the time, Hubby and Mom work on various professional and personal projects, and I write thank-you notes, read, and sleep when the Benadryl kicks in. I had a change in perspective toward the end of the day. The lady in the room next to me was obviously having a very difficult time. We could hear her vomiting every few minutes--difficult to listen to, excruciating to live through. The chemo nurse helped her as much as she could, but when the worst of it was over, she pulled up a chair to the lady's bedside and gave her this grim news: "At this point, there is no way to continue this course of chemotherapy for you." The conversation continued quietly, with the woman's husband asking what--if any--other options might be available. I was floored. I have been so wrapped up in feeling sad about my cancer and my chemo, that it hasn't really occurred to me to be truly thankful. What if I was the lady on the other side of that thin wall? What if Nurse Michelle had to say to me that chemo was no longer an option? Lord, forgive me for taking this awful, life-saving medicine for granted.

On Wednesday morning, Mom and I drove back down to Dallas for my Neulasta shot. Neulasta is a must during chemotherapy! It boosts my white blood cell count and helps protect against infection, especially during these days when my immune system is compromised. The labs I had done last week were right on target, so I guess it's working.

Also on Wednesday, I received a much-needed, much-appreciated gift. Precious friends from our Sunday School class are sharing their housekeeper with us! I was a little nervous when she dropped by earlier in the week to get a look at the house. I obviously have not been doing much (okay, any) cleaning. I showed her around and watched her carefully as she worked out some fancy housekeeping equation in her head. It had something to do with the number of bedrooms + the number of bathrooms - the pity she felt for me=how much she will charge. While she was figuring, Goliath charged in the front door, cheeks bright red and breathing hard from riding his bike. The next second, Little Middle and Baby ran through the back door, fresh off the trampoline. The air was filled with the smell of sweaty little boys. The tiny Latino housekeeper looked at them with an open mouth and said to me, " have three boys?" I nodded and introduced the stinky boys to her by name. She looked at them again and said (this time more to herself than to me), "TRES?!? Oy, Dios." Then she offered to knock 5 more dollars off the price of weekly housecleaning. She left my home that evening probably feeling grateful to Dios that she is not me, and I felt like I had won the lottery!

I had an appointment with Dr. M before I left for the wedding last week. He asked a lot of questions about the first round of chemo: how I felt, how long it took for me to get "better", symptoms, etc. He was not too thrilled with my report that it took a good 7-8 days for me to be semi-functional. According to the good doctor, most patients need about half that time after a chemo treatment to begin to feel more like themselves. He attributed some of that listlessness and extreme fatigue to possible dehydration. So, in an effort to ward off dehydration this time around, he put in orders for a home health nurse to come out to my house and run fluids. Nurse Debbie came for the first time yesterday. After nearly 2 hours, all of the paperwork was filled out, and my Caretakers (Hubby and Mom) were trained in hooking up an IV line, operating the pump, proper sanitation procedures, saline and heparin injections, and even removing the needle from my arm. It was pretty fun last night, especially given my drugged-up state of mind, to watch Hubby act as my own personal nurse. He did a great job, though! I will do another 8-hour IV drip today, with the final one tomorrow.

About my hair...I wasn't sure I would be able to write about my hair on the blog. I can write about cancer, my family, my faith--but somehow, telling you about my hair makes me feel extremely vulnerable. But over the course of the last week, as I stood next to my best friend during her wedding, and danced with my husband, and survived another day of chemotherapy...I was reminded that there are literally thousands of people who are faithfully bringing my name before the Father every single day. Many of you are my friends and my family members, but there are MANY more who have never even met me...yet you continue to pray. That's not something I take lightly, so I want you to know everything--even the things that feel ultra-personal. Early last week, my hair began to fall out. After a couple of days and one traumatic shower, it was obvious that I would not be the first Taxol patient on the planet to keep her hair. So I made the heartbreaking decision to go ahead and take care of it before I went to Houston for Caroline's wedding. Mom and I went to Survivor Gals, and she held my hand and sang to me while the stylist shaved my head. I could feel the hair sliding off my head and the tears rolling down my cheeks, but I still felt a sense of disbelief--a "no-way-is-this-really-happening-to-me-right-now" feeling. I did not look at my bald head until late that night. I was safely locked in the bathroom, ready to wash my face, when I peered in the mirror. One glance was all it took to sink me to the floor and consume me with shoulder-shaking sobs. I don't know why it is that my hair seemed so important, or why losing it has been so devastating. I feel real grief over it! I also feel ridiculous and impatient with myself. I have a disease that could KILL me, and I have spent much more time and energy worrying and grieving over my hair than anything else.

It's been just a little more than a week since I lost my hair. In some ways, it seems MUCH longer. It's amazing what you can get used to if you simply have to. In all of the pre-hair-loss discussions, I had promised the boys that I would never go out in public without my "pretend hair." The last thing I want to do is make this more difficult for them! So when we go out, or when other people are around, I wear my pretend hair. But when it's just us at home, my head is covered by a hat, scarf, or turban. All three little cowboys seem to be adjusting just fine. Last night, after his shower, my precious Goliath came out of the bathroom wearing clean pj's and my black Bank Robber hat. He did not say one word about it, choosing instead to crawl up in bed with me and cuddle. No words were necessary.

Some days I look in the mirror and tell my reflection that yes, I can DO this. That I AM doing it! Other mornings, I look and all I see is a shell of the old Allyson. Some days are sunny and hope blazes through; other days are clouded over and doubt and depression linger like the smell of sickness. I hate those days. It is on those days that I remind myself that, sick or not sick, I am precious to God. "For you are a people holy to the Lord your God. The Lord your God has chosen you out of all the peoples on the face of the earth to be his people, his treasured possession." Deuteronomy 7:6

I am chosen. I am treasured. And with my God's help, I will beat this!

Snuggling with my Baby

Hat time with Nana!

Tuesday, April 20, 2010

Caroline's Wedding

When I was five years old, my family moved to a new home in Conroe. Weeks after the move, I started kindergarten. I didn't know anyone at all. On the very first day of kindergarten, I saw a cute little girl with the curliest red pig tails you can imagine. That little girl became my best friend that day, and we never looked back. We had sleepovers, we went to the roller skating rink on Friday nights, we went to high school football games (her dancing on the drill team, me marching with the band), and we double dated to our senior prom. She stood next to me as my Maid of Honor on my wedding day, and this past Saturday, I was honored to return the favor as she said "I do" to the love of her life.

At the rehearsal dinner

The happy couple

Ready to walk down the aisle!

Me with my man, sporting his new hairdo in support of me. I love him!


Dancing with my boys...

and my brother.

The whole family

Sweet Caroline~This picture says it all. I will treasure every memory of your special day, but especially this precious moment we shared. The tender words and the tears will be locked in my heart forever. You have been part of me for nearly 30 years...I can't even remember a time that I didn't have you. You were every bit as beautiful on Saturday as I knew you would be. Thank you for giving me the great gift of YOU and sharing your day (and your life) with me. Here's wishing you and Lowell all the happiness you deserve! I love you.

Wednesday, April 14, 2010

Broken Hallelujah

With my love and my sadness
I come before you, Lord.
My heart's in a thousand pieces,
Maybe even more.

The last few days have been filled with small joys and great sorrow. I was in the backyard on Sunday afternoon with Little Middle and Baby. Hubby had taken Goliath to Lowe's, giving the three of us a chance to play playdough on the picnic table without interruption. While we rolled out the pieces we needed to build The Longest Road Ever, I told the boys that Mommy is going to lose her hair because of the chemo medicine. Little Middle had a few tears and sniffles, and even more questions. "Why does the medicine do bad things to you, Mommy?" "Will you be sick again if you don't have any hair?" "Will you look like Poppy?" (That one made me laugh.) Baby listened intently, but finally got fed up. He put his little hand on his hip, looked at his brother, and said, "Little Middle, it is okay, because God is taking care of Mommy." Then he went back to building the playdough road.

Hubby and I had decided that we would do everything we could to prepare our sons for what is to come. After all, they are just as much a part of this family as we are, and they deserve to know what is going on. So after we enjoyed a takeout dinner and a little bit of classic Star Wars, I put on my wig (aka "pretend hair") and pulled out the hats/scarves we had purchased. We let the boys see how much the pretend hair looks like my real hair, and allowed them to try on some of my hats. Each hat has a name--there's the Swimming Pool hat, the Bank Robber hat, the Blue Bandana (which is actually a beautiful floral print scarf, but my kids like the word "bandana" because that is what cowboys wear), the Karate Kid hat. Little Middle and Baby had a great time modeling for us, and we were able to snap some pretty funny pictures. Goliath, on the other hand, did not enjoy our little family meeting at all. He kept a safe distance from me the entire time, and did not say much. As soon as he was able, he escaped to his room, and when Hubby went after him, he was laying on his bed crying. I took over (I felt a sense of entitlement--it's MY hair, after all!). But after I lay down next to him and wrapped him in my arms, I was lost. All I knew to do was to hug him and tell him that I love him, and that God loves him. We cried together for a long time, and it felt like he was comforting me just as much--maybe more--as I was comforting him. After a while, the tears stopped, and he whispered these words: "Why is this happening to us, Mom?" I swear I heard my own heart break.

I don't know, baby. I DON'T KNOW.

How could I doubt your goodness,
your wisdom, your grace?
Oh Lord, hear my heart
in this painful place.

On Monday, I got up early, and after dropping off my two older boys at school, I headed to a place where I love to be: preschool! I have the best class of 4-year-olds, and I have missed them terribly. I have been feeling pretty good this last week--good enough to go back to teaching, at least for a little while. I was tired after a few hours, and left around 11:30. But those sweet little friends were every bit as happy to see me as I was to see them...the smiles on their faces made every minute worth it!

On Monday and Tuesday evenings, I volunteered to be the parent on Sports Duty. I took Little Middle to his karate class and to soccer practice. My boy athlete amazes me...I love to watch him learn new skills and play. In spite of his quiet nature, he loves karate, and is quite good at it! I especially enjoyed watching him spar. He went four rounds, and won each time! On the soccer field, he is fast and swift. He listens carefully to his coaches, and tries hard to follow their instructions to a T. He swells my heart.

These seem like small things, but I have missed them so much! My life is being a wife and a mom. These four people I live with are everything to me. There is nothing I would not do to protect them and keep them from being hurt. It feels like my prayers are falling on deaf ears--is it really too much to ask that I am able to keep my hair? But this truth from my childhood still rings true: Jesus loves me, this I know. I will continue to trust and praise Him, even when all I can offer is a broken hallelujah.

When all that I can sing

is a broken hallelujah

When my only offering

is shattered praise

Still a song of adoration

Will rise up from these ruins

And I will worship You

and give You thanks

Even when my only praise

is a broken hallelujah.

Friday, April 9, 2010

Week 2 Recap

It is 4:42 a.m, and I have been wide awake for almost an hour. This is just another way in which my body has betrayed is very confused about our sleeping schedule.
I am nearly to the end of Week 2 of my new Life o' Chemotherapy. Friends are sending me Facebook messages and kind e-mails wondering how things are going. I was trying to think of a good analogy for this and here's what I came up with: I feel like one of the poor little lizards that Little Middle loves to catch and keep as his "pets" in the summer months. Chemo has made me feel stuffed in a jar, with just enough holes cut in the top to get some air. Week 1 had me flat on the bottom of the jar--no stirring, just surviving. Week 2 has allowed me to move around a little bit. Every day I feel a little bit stronger and more "normal," although it does feel like someone keeps picking up my jar and shaking it to get a good look at what I might do next. Hopefully Week 3 will be even better and I can climb the rest of the way to the top, towards freedom.
When we went to "chemo school" a few weeks ago, the nurse ran down an endless list of possible side effects. I was listening, but still holding out hope that most of those wouldn't apply to me. I'm not the typical interperitoneal chemotherapy patient, you know. I'm young, and other than the cancer that invades my body, I'm healthy. That's kind of a joke, ha ha. So now I know that the drugs are more powerful than the mind games I was playing. Nausea is at the top of the list! From the second day forward, I felt sick. Never actually throwing up is a big mark on the positive side, but the icky feeling...ugh. The good news is that I have 5 different medications that treat the nausea symptoms. I try not to think about what I would have felt like without those meds.
Another big obstacle has been food. I have never had an issue with food--EVER--and all of a sudden, I can't eat. I don't even want to be close to food! Chemo changes the senses of taste and smell. I'm still navigating these waters to find out what works for me and what doesn't. The biggest disappointment has been my lack of taste for all things sweet. My family has enjoyed some of my favorite desserts while I hide in my room to avoid them. Sigh.
You also hear about chemo patients feeling fatigued. I have discovered that there is a big difference between "tired" and "fatigued." Tasks that should be fairly simple--like drying my hair or sorting laundry--can easily become overwhelming. I am learning how to lower my expectations for myself and break my days up into sections, so that I can try to accomplish smaller things and still get the rest that I need.
Of course, the last major thing I was concerned with was the possibility of hair loss. I was given this disheartening statistic at chemo school: 100% of Taxol patients lose their hair. 100%. The odds are stacked against me. Preparations have been made and many tears have been shed. The waiting is hard. Nonetheless, Hubby and I pray every day that God would single me out to be the first person in the history of oncology to keep their hair while undergoing treatment. It could happen.
All of this sounds kind of pitiful. I hate to be a downer, so here are a few things that have happened this week that I have the sense to be thankful for:
1. After 8 days of being in the house, I drove myself and the boys to Bahama Bucks where we enjoyed the first shaved ice of the season. Baby chose Blue Bubblegum flavor, and his lips (and cheeks, and nose, and shirt...) were stained blue for two days.
2. I am in awe of the bluebonnets that have sprung up and the green, green grass and trees. His Creation is beautiful.
3. My family enjoyed dinner together, with all 5 of us sitting at the table.
4. I went to the park with my dad, my kids, and Abby dog. I watched my daddy organize all the neighborhood kids into a great game of soccer, and loved seeing my boys run and play in the sunshine.
5. I received the gift of a coffee table book filled with pictures from a family photo shoot we did before I started chemo. The book is beautiful, as are the hearts and the talent of the two friends who blessed me beyond words with it.
He is still good.
I said to the Lord, "You are my Lord; apart from You I have no good thing." Psalm 16:2

Wednesday, April 7, 2010

Friday, April 2, 2010

Now I Know

I am emerging from the fog of chemotherapy for a few minutes, just to let you know that I am still here. Chemo Day #1 went as well as it could have gone. It got off to a rough start with 3 different nurses trying 5 different times to start an IV, but after that it was uneventful, long, and slightly boring.
As predicted, I have not felt well in the last few days. I am nauseous, but not throwing up. As long as we stay on top of the nausea medications, they seem to be doing their job of managing those particular symptoms. I am extremely tired, and I sleep a good deal of the time. I don't have any energy, but I trust that some of that will be restored in the next few days. Headaches come and go. Goliath was startled when he walked in and I was wearing a cool gel mask (helps with blood flow to ease headache pain). He said softly to Hubby, "Daddy, Mom looks like Zorro, only with a blue mask." I am supposed to be drinking a lot of fluid, but I'm having trouble getting it all down. I woke up this morning with that infamous metallic taste in my mouth--ick! A friend suggested hard candy, specifically Life Savers, to help with that, and it turns out that she was right.
The three little cowboys seem to be doing fine. They are enjoying quality time with their dad and their tireless Nana! We know that the hardest days are still to come, and we so much appreciate your prayers for our family as we put our faith in the One who goes with us.
"Be strong and courageous. Do not be terrifed; do not be discouraged, for the Lord your God will be with you wherever you go." Joshua 1:9