Wednesday, October 27, 2010

He Really Loves His Mama

Goliath: "I think I love you more than cheesecake, Mom."

Tuesday, October 19, 2010


I met with my oncologist yesterday. The appointment was not routine, rather, I requested the meeting in order to discuss the difficulties I have been having with maintenance chemotherapy. A bit of background: When I began maintenance chemo in August, I was told that it would be no big deal in comparison with the IP chemo I had just completed. I was assured that I could resume my regular activities and that I would feel much like my old self. The nurse told me then that the maintenance chemo would be "just like drinking water." Well, someone apparently poisoned the water hole. The maintenance has been horrible. I have experienced many of the same symptoms that I had with the regular IP chemo: debilitating leg pain, prolonged headaches, and EXTREME fatigue, to name a few. The big difference is that with IP chemo, I could plan to be sick for a few days, but I knew I would gradually feel better before it came around again. On the maintenance regimen, I am always either going to chemo or recovering from having been there. It is a constant cycle of misery and trying hard to get ahead. Even worse, my precious family is paying a very high price. I have been unable to do much of what I normally would. My Hubby is trying to take over for me in a lot of ways, but he is exhausted. I am doing minimal mothering, and the little cowboys deserve better.
So I said that to Dr. M. I told him that the quality of life that I have with the maintenance protocol is unacceptable to me and my family. I told him that I needed a change. I was worried that he might try to assure me that everything is fine, so I was greatly relieved when I described my symptoms to him and he said, "None of these things should be happening!" Good--I thought I was going crazy. We spent quite a while hashing out the details of a new chemo plan. In the end, it looked like this: I will not be receiving Taxol at all anymore. The once-a-week Taxol IV has been replaced with a once-a-day-Cytoxan pill (When I googled Cytoxan, one of the search results was "types of medicine for cats with breast cancer." Yikes!). The Cytoxan is another chemo drug--not as preferred as Taxol--but well-tolerated and effective. I will continue to receive Avastin as an antibody every other week and participate in the clinical study for that drug. The schedule remains the same: I will have a CT scan at the end of this cycle (mid-November), and another scan at the end of the sixth cycle (February-ish). At that time, if no new cancer shows up, I will be released from therapy and we will continue to monitor with scans and physical exams.
In addition to working out the chemotherapy mess, I also felt ready--sort of--to ask some hard questions. Up until now, we have dealt with whatever issue was at hand and pushed all of the looking-into-the-future things to the side. As my body and my treatment have changed, however, so has my thinking. As much as I wish it could be different, my reality is that my body is affected by a life-threatening illness. I very much want for Dr. M to tell me that without a doubt, I will live to be a very old woman. I want to hear that I will raise my little boys to be fine men. That I will sit in the front row at their high school graduations, that I will take them to college, and after I leave them in a dorm room somewhere, that I will go home and bake cookies for the care packages that I will send them. I want him to say that I will dance at their weddings and that their wives will be the daughters I never had. I want him to say that there will be plenty of time for Hubby and me to travel together, and to build our dream house with a huge porch where we will sip coffee in our rocking chairs when we are very old (but still very much in love). So I just asked him: Best guess...what does my future look like?
Deep breath. Almost certainly, the cancer will return. Hopefully it will be a few years, during which time I will live like I want to live instead of living according to what cancer dictates. When it does come back, it will most likely redevelop in the pelvic region, and everything I've done this year will need to be done again. Will cancer kill me? Maybe, maybe not. Dr. M is noncommittal, although we got a big lecture about the power of positive thinking.
All in all, the news and the steps taken have left me cautiously optimistic. I have been so sick for so long that I almost expect the next thing, whatever it is, to be bad. Today my weary body and my discouraged heart feel ready. I am ready to try again, and encouraged to start putting one foot in front of the other. The journey is l-o-n-g, and the steps are so small. At the same time, my God is SO BIG. Even in my days of despair, He has been faithful and excessive in the ways that He shows His love for me.
"I will be glad and rejoice in your love, for you saw my affliction and knew the anguish of my soul. You have not handed me over to the enemy but have set my feet in a spacious place." Psalm 31:7-8
I am trusting You, Lord, as we take these next small steps together. Give me the will to keep up the good fight and to keep pointing back to You. Help me to be the best wife and mom that I can be to my guys. Thank you for walking with me and flooding the path with Your light when I can't see where to go or what to do. I will continue to hold tightly to Your hand and follow Your lead. Amen.

Friday, October 15, 2010

Birthday Blog

Some time ago, I joked with my mother that she could be a guest blogger for me someday. Today, on my 35th birthday, she is doing just that. Thanks, Mom, for sharing my life and your heart here...

On October 15, 1975, I became a mother. I already knew--not through technology, back in the day--but in my heart I knew for sure that our first child would be a girl. And then she was here, ten fingers, ten toes, beautiful in every way. A daughter. Allyson Amber. What joy!

Larry and I couldn't believe that God would give us such a gift, but apparently He had, because we took our amazing daughter home with us and she began showing us who she was. She grew, and soon she skipped off to kindergarten with her little ribbon-tied pigtails. She was the smartest girl in the class, she made the best friend ever, she was everything a mother could want. Sweet joy!

Years flew by. Every school year started with an oh-so-cute picture of Allyson and her red-haired friend Caroline. Allyson became big sister to Phil and Jenny, loved her daddy above all people, and, through God's grace, developed a relationship with her Heavenly Father. Together we went through the drama of junior high and the happiness and minor heartbreaks of high school. She made us proud. Continuing joy!

One of my favorite quotes says that being a mother lets you know what it's like "to have your heart walk around outside your body." Every mother knows this feeling. Allyson is my heart. (Phil and Jenny too, of course. How blessed am I!) The day came when we did the strangest thing. We drove Allyson to college and left her there. I've never known such a feeling of incongruity as I felt looking back and seeing my heart happily waving me away. This, even this, was joy.

In college Allyson fell in love with the man she would choose to marry. She chose well. Clint is a man who is committed to protect her and walk with her through all the stages of life. Together they have given us the world's three greatest grandsons and made a home filled with love and laughter. Joy multiplied.

Along the way, a surprising thing happened. My daughter became my friend. Not just a you-might-as-well-be-friends-because-you're-stuck-with-each-other kind of friend. She is the kind of friend who makes me laugh like no one else, who knows what I'm really thinking, who holds my secrets and trusts me with hers, who wants the best for me, who I would have chosen to be my friend whether she had been my daughter or not. That is an amazing joy.

Today, my daughter, my baby, my girl, my friend, is 35! And today she faces a powerful, terrible enemy named Cancer. She stands strong and proud as she faces the foe that makes her future uncertain. In some way her strength protects all of us who love her so much. She says, "Lift up your eyes. See that God is good," and we see. She says, "Be still and know that He is God," and we are stilled.

Do you wonder what I feel when I see my girl suffering through this horrific trial? Oh, I feel the things you would imagine. I feel deep sorrow, great fear, dismay of the why-couldn't-it-be-me? variety; but there is more. I feel the deepest joy I have known.

This amazing Allyson is my daughter and my friend. I have the privilege of walking this walk with her. Our love grows deeper with every step. My admiration for her expands daily. And wonder of wonders, the greatest lesson of mothering becomes ultimately clear to me. All along, she has not really belonged to me. She has belonged to her God, her Creator. I stand back and watch as He cares for her and the two of them face the future. I know He has her, He loves her, He holds her. And that joy is unspeakable.

Happy birthday, Heart Girl. I love you.

Wednesday, October 13, 2010

Thursday, October 7, 2010

I Want to Say...

I wrote a new post earlier today while I was in the chemo room. I went back and read it, and realized it did not make a bit of sense. Crazy drugs and crazy people will do that to you. The crazies will also crush your ability to put together coherent thoughts, stand up straight for any length of time, or tolerate any noise/chaos/changes without wanting to pull your hair out (if you had any to pull).
I have a lot to say, but I don't feel like I am able to get it down well enough or fast enough to justify telling it. Would you put up with one more bullet point list? Thanks. I want to say:
*That maintenance chemo is harder than regular "big" chemo in a lot of ways. At the top of the list: Going every single week. Thursday used to be my favorite day of the week, and now it is my least favorite. Even The Office can't make Thursdays OK for me anymore.
*After suffering debilitating leg pain, days-long headaches, and extreme fatigue, I spoke up and told Nurse Stephani that maintenance chemo was not at all like "drinking water," as I was told it would be. She agreed that something is amiss in the way my body is responding to the treatment; I have an appointment scheduled with Dr. M on October 18th to discuss what could possibly be wrong and what we should do to fix it.
*I talked with each of my boys and now have their blessing to walk around the house with my head uncovered. Goliath told me that I "look like Uncle Phil, only a girl" with my "new" hair growing in.
*Gus the dog is able to get into more trouble now that he's tall enough to reach more stuff. His cousin Moose refers to him as "that giant puppy."
*I really want to take the boys to the state fair, but I don't know if we can make that happen this year.
*I like to mark in my books when I read. I just finished a book that is so marked up, I don't know if it will even be helpful when I go back to look for something specific. This book tore me up in a good way, and it took me forever to read it because I kept having to stop and absorb the information and apply it to my situation. It is entitled to its own post later on.
*We are being blessed by friends bringing dinner to our house twice a week while I am doing maintenance chemo. A lot of those friends don't seem to think that their gift of food is adequate. Hear me loud and clear, you cooking pals 'o mine: There are days (like today!) when your aluminum dishes full of warm goodness make me stand in the kitchen and cry tears of gratitude. You are doing for my family what I can not do, and that is HUGE to me.
*Earlier this week, city workers came out to repair the sidewalk in front of our house. Baby and I went out and sat on the grass and watched the workers mix, pour, and smooth concrete for the new sidewalk. Little boys love big trucks, and he was a terrific mix of wonder and questions. I love that littlest man, and I loved making that memory with him. He reminds me why I must press on and keep giving everything I have.
*The Neulasta injection I receive every month costs $4,150.00. For ONE SHOT. Let that sink in.
*Insurance is so necessary, but is also such a pain in the rear.
*I love my job. I appreciate it even more now for the sense of normalcy it brings to my life.
*I still have two kids who need Halloween costumes.
*It is hard for me to answer when people ask me "How are you feeling?". I want to be honest, but I don't want to sound like I'm complaining.
*I really wish my sister and brother lived close to me, but I'm thankful for my very cool brother-in-law who does.
*My family is getting used to Hubby being at work all day. We are all adjusting to the new schedule, and we all really like it (especially the part where he comes home)!
*I've had a few lay-it-all-on-the-table talks with God lately. I've been very honest in telling Him that I am weary, and I just don't think I have what it takes to keep on going. I cry. I whine. I beg for Him to make it all go away. He tells me that He is nearby (Psalm 14:17), that I am safe (Psalm 91:1-2), that He has good plans for me (Jeremiah 29:11), and that there should still be joy in the midst of my troubles (James 1:2-3).
*A couple of friends put on a Pampered Chef show a few weeks ago from which all proceeds were to be donated to Team Allyson. I don't know what kind of funds a typical show nets, but it seems like everyone I know bought something! I am so grateful, and so humbled. Thank you, friends.

Sunday, October 3, 2010

Ultimate Chemo Brain

My sister and her mister were in town this weekend for the Texas-OU game. I don't want to discuss the game itself, or the fact that they ate a deep-fried PopTart at the fair, so I will entertain you with a true story of chemo brain instead.
I fixed Waikiki Meatballs for dinner last night (thanks, Dee!) and there was enough to feed my hungry Seester when they got back from the fairgrounds. I fixed her a plate piled high with meatballs, rice, steamed sugar snap peas, and bread. I handed it to her, she set it down on the table and excused herself to the bathroom. While she was gone, I cleared the table of all remaining dishes,--including her untouched dinner--brushed all food into the trash can, and loaded the dishwasher. When Jenny came back to the kitchen, she said, "Hey, who took my food?" And you know what I did? I helped her look for it. Oh, yes, I did.
Thank you, chemotherapy, for destroying my brain cells but giving my family a reason to laugh at me.