Friday, December 26, 2014
Tuesday, December 16, 2014
God placed me in the waiting place for a good reason. And I have chosen (believe it or not) to stay in the waiting place. I dread the waiting place. I loathe the waiting place. There isn't nearly enough activity in the waiting place. But the waiting place has become my friend. Upon arrival in DC, we immediately set upon meeting my new oncologist (who is a rock star that looks just like a blond version of my sister in law) :)....we both had questions regarding some of my test results and so we decided to rescan my body and take a closer look at my tumors. While we waited for the results, I also had an appointment with the National Institutes of Health (NIH) up in Bethesda, MD. Let me tell you, that place is amazing. While it is an ALL DAY event to go into the clinics, it was worth EVERY penny of my time to spend with incredible researchers, doctors, nurses and other staff that walked you through the entire protocol process. Remember last week where I wrote about the top ten things every hospital should do (you can read about it here)? Well, NIH knocked these out the park (and yes, they had Starbuck's coffee too).
Following additional testing, exams, and a review of my history, my doctor at NIH looked me in the eye and said, "Anna, I'm 39 years old too. I have a wife, kids, a job. If I were you, I would not seek treatment for your cancer. It's not extensive enough. The staging is not correct. Your "good cells" in your tumor far out number the "bad cells" in the tumor and you are young. This needs to be your decision and if you feel you cannot wait for treatment, then we have treatment for you. But if you can watch and wait, you slow down entering the treatment cycle." With my kind of cancer, once you enter the treatment cycle, you begin a cycle of remission, relapse, treatment, and over again. This is very hard on the body and exposes the body to a lot of toxicities. I'm young. My tumors are not causing me to be symptomatic at this time, it behooves me to watch and wait. My NIH doctor shared hope for me. He wants me to be a part of a natural history study to explore WHY I have this cancer. And he explained that when the time is right, they will have treatment for me. It could be a multitude of different things, but when you have the opportunity to wait, you also have the opportunity for new research to be released for public protocols and each year, better and better treatment becomes available. One day, there will be a CURE for my kind of cancer. The waiting place gives me a chance to be a part of that "one day."
My local oncologist concurred with my NIH doctor that the repeat scan found only a small, 2.3 cm tumor cluster in my neck. Nothing was seen in my chest or abdomen. My blood work is beautiful and both doctors concurred that my shoulder pain was a physical ailment versus as tumor ailment (in fact, my scans DID show arthritis of by C7-C9 vertebrae, so we DO have conclusive evidence I am getting older--HA!).
Which leads me to the dreaded waiting place. I have never liked the dreaded waiting place. As a do-er, the waiting place blows. But I am amazingly at peace about this decision to watch and wait.
The waiting place allows me to grow closer to God. I am putting my trust in God that the waiting place is right for me. The waiting place allows me to physically hand over my cancer and my care to God and trust in the Lord God with ALL my heart and ALL my body. This gives me joy. I still have worry and anxiety. I still wonder if I am doing the right thing, but in this waiting place, it allows me to PRACTICE TRUST that God has a greater plan in store for me than anything I can possibly understand. God has led me to this place, to these doctors, and to this plan. The waiting place has allowed my tumors to either get smaller or disappear, or whatever might have happened. Without the waiting place, I would be starting treatments that I might not be ready to use. In this waiting place, we have the chance (albeit small, 8% chance) of spontaneous remission. In the waiting place, there is hope, there is peace, and there is a chair with God by my side. In the waiting place, I can hang up my coat of worry and busyness and rest a little. In the waiting place, there are all sorts of levels of healing.
Some might say my story is a story of mis-diagnosis. One can say that. I would rather think of this part of my story as a testimony to prayer. I have simply THOUSANDS of people praying for me all over the world; of all types of faith and belief, and of all sorts of denominations. God has heard everyone of those prayers. A friend described it "storming heaven" with prayers. Y'all keep storming heaven for me. This isn't over. This isn't a sprint. This is a long haul of the rest of my life and prayer makes a HUGE difference.
This has been a wonderful example of the power of social media. We have a prayer chain without end when we share our lives over the Internet and ask each other to pray for each other. YOUR prayers matter. They have made an amazing difference in my life and I cannot express my gratitude enough.
Does this mean I will be in the waiting place forever? No. I am okay with this. I will probably have treatment at some point in my life. But today is not that day. Does this mean my cancer will not grow? Probably not. But today is not that day. Could things still go terribly wrong? Possibly. But today is not that day. Could things possibly get even better? Maybe, but today is not that day.
Today, is a waiting day. Today, I am okay with the waiting place.
God is there.
Sunday, December 14, 2014
Wednesday, December 10, 2014
Thursday, December 4, 2014
Sunday, November 30, 2014
Thursday, November 27, 2014
Happy Thanksgiving to you all! And don't forget your Christ Walk today! You need to burn off that slice of pie!:)
Tuesday, November 25, 2014
I've been going through a lot lately. Digesting a cancer diagnosis is not quite as palatal as digesting a piece of chocolate cake. But we still need to digest it and work through whatever has been thrown at us to conquer. I've known theologically through all of this that God was with me. I've known it in my heart, but at times my heart was so hurt and so angry and so disillusioned that all that negativity was keeping me from feeling the love of God during this time.
I think this is normal. I think God understands that. I think God knows that we are so fragile, so sensitive to our emotions that we need time to process and digest before we can realize that adversity can result in cheesecake even when it feels like a fallen souffle' (I may have food on the brain going into Thanksgiving)......I digress....
With that said, we are fragile and because we experience life through our senses, we need to feel, touch, hear, smell, taste and see God to sometimes believe that God is with us on our journey. Sometimes it takes a looooooooooooooonnnnnnnnnnnnngggggggggggggggggg time for us to see those neon signs in front of our faces, but they are there. Sometimes the hardest thing about faith is believe in God and knowing God is with us without those experiential senses tied to it. Just because we cannot feel, touch, smell, taste or see God sometimes, doesn't mean that God is not there. But then there are times, our sense are overwhelmed with God right there, right with us and the moment we need it most. God comes to us through Grace.
I've said it once, I'll say it again: I am far too flawed to understand the WHY THINGS HAPPEN in the world, but I believe in Grace. Grace WILL prevail at sometime. Grace Happens through People. And I can show you an example of where I got to feel, touch, see, hear and taste Grace in action in my life. God came to me through Grace.
Grace happened to me last week. Grace showed up in my life like a big neon sign for a cupcake bakery. Grace came to me frosted, with pink roses and sunshine and smiles and promises THAT EVERYTHING WAS GOING TO BE OK.
Grace rocks, people.
Grace came to me in the form of a letter. You see, my husband and I are moving from Kansas to Virginia with the Army. We've been holding off on my treatment (with the approval of my doctors) until we get to our new duty station. We knew about this move before my cancer diagnosis. In fact, we had put down the contract and earnest money on our new home the week before we found out the news. In my gut, I knew (remember grace! listen to your gut!) that we should move anyway and we would figure out how to do that around the cancer.
But the move was an added complication to an already complicated mess and it didn't help with the struggles with anxiety I continued to have.
But then this letter came. This beautiful letter that had grace coming from it out of every sentence. You see, the executors of the estate that we were buying the house from had found my blog. And they had reached out to me from my blog email address (email@example.com) to send me a message. You see, the previous owners of the house were a lot like me and Treb. He was a retired military man--a WWII decorated veteran and his wife was a nurse like me. They were a strong Christian family with deep ties to the area we are moving....and Gail told me in this letter that this house was meant to be ours. SHE SAID MY CANCER WOULD BE HEALED BY THE LOVE IN THAT HOUSE (Ok, so that wasn't what she wrote, but the message I received! God's grace sends messages!). Gail has told me I can share the letter with you all so you too can see that GRACE HAPPENS. Grace comes like an advertisement in Neon when you need it and I desperately needed this message from God that everything was going to be ok:
Tuesday, November 18, 2014
Saturday, November 15, 2014
Wednesday, November 12, 2014
Saturday, November 8, 2014
Friday, November 7, 2014
For me, the number one no-no is to get on the internet and start googling lymphoma. It scares the hell out of me. I can take only short bursts of information before panic takes over. It's the sure-fire way to beat down my warrior attitude.
But every so often, I start to think I am strong enough to handle the information and I go searching. And invariably, something comes up that scares the hell out of me and it makes me fall apart. And as a former oncology nurse--the knowledge I have from oncology 15 years old does more harm than good. The specialty has come so far from when I worked in oncology practice. But my memories and knowledge were far more of sick people that were fighting for their life than those we helped. And I remember selfishly at that time wondering why any one would put themselves through this treatment. Prior to my children, I remember telling my husband that I would rather die than go through any of the cancer treatement I saw during those years of practice.
I want to apologize to every one of my patients for that thought. I have kids now. I have more experience and friends and goals to accomplish. I understand you will do ANYTHING to have more years with those you love. It's a fierce desire. I will fight unfailingly for time with my family. It's not that I am afraid to die, or afraid of God. It's just that I love my kids and husband that much. We have so much more we want to do together.
You see, my disease is considered incurable. Yes, I will get remission, but this is my life now. And scientists quote numbers of 5 to 10 to 20 years. But this isn't good enough for me. My children will be 29 and 27 with 20 years...I want more. More, more, more. And I pray about this insanely. I want to see my kids grow up and my grandkids and enjoy retirement with my husband. I hold on to this want fiercely because it is based in love. I cannot think that God will not understand this becasue I love my family so fiercely that I cannot and will not let them go yet. God commanded us to love one another. It is this fierce love that calls me to fight. This cannot be wrong.
Thursday, November 6, 2014
We are in waiting mode. I hate waiting. As Dr. Suess would say, "And then you come to the dreaded waiting place." Waiting for an answer. Waiting for a treatment day. Waiting for a treatment plan. Waiting for information. Waiting for a doctor. Waiting for results. Waiting for news. Waiting to heal. Waiting for a moving date. Waiting. Waiting. Waiting.
Right now, we have to wait for our move. My doctor here won't start me on treatment in the middle of the move, and my doctor in the new place won't make a decision until I get there on what that treatment will be. We have gone from "you must get there by the beginning of December to start treatment--you can't wait!" to "We'll make a decision about your treatment when you get here. Just let us know." To say this is conflicting messaging is an understatement.
I have two very different doctors with two different opinions on what to do and neither of them gives me any sort of peace. So, I am pulling on God for patience, because God knows I have none of my own. And I sit in this waiting place, where one doctor seems very comfortable with waiting and watching for me to become symptomatic and all I want to do is kick this parasite out of my body as fast as I can. If I could claw it out of my chest I would. Watching and waiting doesn't resonate with me for a number of reasons. And I disagree with them completely when they say I am assymptomatic.
One doctor would start treatment in 2-4 weeks. She would treat me if I was not moving--but moving gets me closer to family and help and good schools and a good job for my husband. And since my cancer is so slow growing and indolent, the move doesn't seem impossible. But then I wait some more. And wait and hear things like "this cancer isn't curable." "We'll get you in remission but you'll relapse." And my mind gets spun up on "this is my life now," and, "this is not how it's supposed to be."
And then there is the other doctor. The one I haven't met yet. The one I am putting my faith, and trust, and life in her hands that I have not seen. I am putting my faith in a woman from 2000 miles away and hoping that she will see me as a person and not a patient. I am clinging to this belief that she will fight for me as hard as I am fighting to live a life with my family without cancer. I have to hope and pray that I am not just another clinical trial to her. I have to hope and pray that she will have my best interest at heart and that she will become one with my cancer posse. I have to pray that God has this all under control because I have NONE of it under control.
I'm in a roller coaster in my mind, my heart, my spirit, my soul and my body. I am either high or low and I struggle to find the equilibrium. And each day I walk. I walk to get myself off of that high or out of that low. And I walk to pray and I pray to continue to be able to walk. And I wonder, wonder wonder what my life will be like. This waiting place makes you feel like you are in a stuck place.
And I still just want it to go away. People, I have plans, and cancer wasn't in any of them. And it
still isn't. I want this crap out of my body now. And this makes waiting a tortuous place.
So the questions you are asking: "What's the plan?" "What's next?" "What are you going to do?" I don't have answers. Because no one can seem to tell me what the plan will be. We will move and then we will hopefully find out what it next. And so I wait, and I pray. Maybe in this interim of waiting, God will make my cancer go away. Maybe God has bigger plans for me than I can understand. I still pray for the cancer to go away. I know God hears me. I am learning to wait and see what those answers will be.
Friday, October 31, 2014
Wednesday, October 29, 2014
But regardless, I've been in pain for about two weeks now and I haven't been able to get the pain under control with just Tylenol and ibuprofen. It's been a vicious cycle. So I finally gave in on Monday night and upped the ante to Percocet. I HATE drugs (which, I'm very aware I need to get over in the coming months, but hey--this is an honest blog, I'll never lie to you about what I think and feel). I took the Percocet as prescribed every four hours by my doc. And yep, the pain went away. BUT, it brought with it dizziness, vertigo and hours and hours of being violently ill. For the life of me, I cannot figure out how people get addicted to Percocet (I know we all have our vices, but....), this crap makes me feel VILE.
Like curl up in a little ball and whimper for your mommy kind of vile.
Which I did.
And I called her and told her I just wanted to hear her voice. And I think I made her feel bad because she's a mom just like me and she doesn't like her baby hurting anymore than I like having my kids hurt. We were pitiful together. She told me how people were amazed at how strong I was. And I laughed. I told her, I don't think people would think I'm all that strong if they saw me now. A pale, shaking, barfing, stooped, shadow of myself. There was no strong in this picture....a lot of pitiful. A good bit of whining and a lot of feeling like a little kid that just wants mama to take it all away.
If you've read my book (if not, go buy it here!) you'll know that my mama was one of the greatest formative forces in not only my faith but me as a person. I love my mama and I'm not afraid to say it. :) And when I'm pitiful and not remotely strong, she's the person I call to get a good dose of sympathy or a swift kick in the rear.
I worry a little bit (OK, A LOT), about how I will tolerate the chemo. I'm a puker (my son gets it from me) and it is sincerely the one side effect that I would choose to avoid at all costs. It takes like 3 anti-nausea meds to keep me from puking from surgery and that doesn't always work. I hate to throw up. Because once it starts....it doesn't stop for at least 24 hours. And I worry that if the Percocet would do this to me, it will be infinitely worse when my system is hit up with something far stronger.
It is what it is and I won't know till I know...but I'm pretty sure that if it's bad, the first thing I'll want is my mama.
Monday, October 27, 2014
Saturday, October 25, 2014
Wednesday, October 22, 2014
Yesterday was the two week "anniversary" of my cancer diagnosis. It still seems a little unreal to me. It's not like we will be celebrating this "anniversary" with cake and champagne. Heck, most days I still ask myself, "did they really call and tell me I had cancer?" It's real alright, but it doesn't feel real. It doesn't feel like it could possibly be right. I still have far more questions than I have answers. I still don't understand why God has put me in this journey--I'm still 100% sure I don't like it. I'm still 100% sure that somewhere, someday, somehow, I will understand, but today is not that day. Yesterday wasn't either and I'm pretty sure tomorrow I will have will have many of the same questions.
I'm still racked by guilt/anger/confusion/frustration/shame/shock (I don't know--pick one of those perplexing feelings and fill in the blank) how I am supposed to lead people to a healthy life (Hey, BUY Christ Walk HERE: It's coming in December and it rocks big time) when I'm obviously broken in some way. I feel a little betrayed by my health practices. I wax high and low between wanting to go full on granola with my approach to my cancer treatment and thinking screw it, I got sick anyway. I'm pretty sure the balance is sort of somewhere in between, but I haven't quite gotten there yet. I look around my house and wonder if the plastic caused this. Is it because I use a cell phone? Is my Keurig dripping carcinogens into my coffee? Is my food really organic, or just another gimmick with more pesticides? Is my shampoo giving me cancer? Where did this crap come from??? And WHY, when I've worked SO HARD for my health, would this would happen?????? I want answers. WHO is responsible for doing this to my body. WHAT is causing this? HOW did this happen? WHERE was I negligent? I really want the answer to "WHY ME?!?!?!?!?"
I have no answers. I may never have answers. That, right there, is what you call, "embracing the suck." It's a favorite military line and it is so apropos.
And while I am fighting this reality internally, my body hurts. I'm sorry, maybe that's just too much information. But I do. My body just hurts. It's probably one of the reasons I am up so early. In someways I'm bouncing back from the surgeries wonderfully. In other ways, I am so aware that my body is just not right. I can lay flat on a hard surface and everything feels out of whack. My left arm and shoulder constantly ache since they took my lymph nodes out. I cannot get comfortable. And. I. Simply. Hate. Pain. Medicine. My guts feel rearranged. My mind feels fuzzy and my hands shake. My body, mind and soul feel completely at odds with each other. I need a serious realignment. Where is God's chiropractor?
I know the things I can and need to do. I'm sharing with you my thoughts and feelings. If I put these things aside, I am an intelligent person, and I know the health care field well. I know what I can do and things that will help. I'm just not thinking very clinically right now. I know that I can go to the chiropractor, or the massage therapist, or the acupuncturist. I can try essential oils and yoga and relaxation breathing and prayer (all of which I do, do some of the time and in some sort of way), but honestly, sometimes it is hard to find the time to do any of this when you are fielding phone calls from case managers, nurses, surgeons, movers, oncologists, work and then there is laundry to be done, or naps to take, and sometimes just getting out of bed. My body needs many more hours to heal and I am impatient with that process. Clinically, I know what I need. I know this is a matter of time, but at my heart, in my inner core: I Don't Have Time for This! And there lies my inner struggle.
I have yet to give in, or embrace my new reality. I am still fighting it tooth and nail. I want to wake up tomorrow (not at 3 am though) and it to be gone. And I mourn that it will not just go away. I feel like I have a big, fat label on my forehead.
Folks, in the psychological realm of things, I am somewhere between denial and grieving. It's a stage. A season. It will pass and there will be a new season. One of acceptance. The new season will be for the warrior. I know it's in me. She's just very tired right now. A little sore and a little beat up. It will come. Just not today, and maybe not tomorrow, but soon.
And as 3 am turns into 6 (it takes awhile to write these days) am, and I pour my coffee into one of my favorite cups, I'm buoyed by its message, "Goonies, never say die."
Sunday, October 19, 2014
Saturday, October 18, 2014
“Don't just read this book--do this book. There is no better book available to inspire and assist both individuals and congregations to start a walking program. Follow the plan outlined in this book, one step at a time, and you will strengthen not just your physical wellness, but also your spiritual and emotional wellness.”
––The Rev. Dr. Scott Stoner, creator of “Living Compass Faith & Wellness Ministry” and author, Your Living Compass: Living Well in Though, Word, and Deed
“This book offers so much more than a walking program for individuals and faith community groups! It is a very thorough, comprehensive, and current look at the interconnections of spiritual, mental, and physical health. In the format of forty days of meditations, exercise, and nutrition information with suggestions for journaling, this book lends itself well to a Lenten health ministry opportunity. In writing about her own challenges with hearing loss and an autoimmune disease, Courie brings hope for living with infirmities, and she does this very personally, in a comforting, supportive, and affirming style.I have done several walking programs in our congregation, but I am excited to pursue the many new ideas and perspectives in this one!”
––Ginny Wagenseller, RN, FCN, parish nurse at Christ & Holy Trinity Episcopal Church in Westport, Connecticut and Province One representative for Episcopal Health Ministries
“For those of you who are looking for a comprehensive approach to walking, fitness, spirituality, and prayer walking, Christ Walk is for you. This disciplined forty day program will make a fine Lenten or anytime approach to getting your body, mind, and spirit healthy.”
––Sara Lee Macdonald, blogger of Walk With Me on Our Journey
“As a priest and endurance athlete, I’ve been keeping a training log and journal for years but have long sought a comprehensive and cohesive way to reflect on mind, body,spirit and athletic pursuits. Christ Walk is the book I’ve been waiting for. Whether you are taking the first steps to wellness or have a full race calendar, those seeking to integrate faith and fitness will find Fitch Courie’s book to be a wonderful resource.”
––The Rev. Jennifer Baskerville-Burrows, co-captain of the SteepleChasers relay team for the Episcopal Diocese of Chicago, half-marathoner, and sometime triathlete.
Anna Fitch Courie has taken what she discovered in part on her spiritual journey through Education for Ministry and put it into action. Christ Walk is a book that teaches you to see God acting in your life and how you can act in return. Anna’s work on the body as the temple of the Holy Spirit and an agent of change in the world will help you change your daily life. Take a walk with Anna (and with Jesus!) on her journey and learn how to follow Christ’s example of walking your way into wholeness. Anna knows that life is one big pilgrimage.