Friday, October 31, 2014

Day 23: David and Goliath

I received great news today. My bone marrow biopsy shows no signs of malignancy. Take that cancer!  It was a total fist pump moment. My thoughts and prayers are with my brothers and sisters who also have received news that buoys them and also with those that received news that didn't pump them up. 

News can go either way. 

My thoughts these days have been a lot about the mind-body-spirit connection of my disease. I've been engrossed with the injustice that my body would do this to me when I have spent the last five years altering our environment, food, lifestyle so that we are all healthier and cleaner eaters. I have been so wrapped up in the negativity and injustice of it all. And I've been secretly fearful that the diagnosis would discredit me and my approach to a healthy, Christ-centered lifestyle. Who takes health tips from a cancer patient?

You will, that's who--because there is far more to a healthy life than a diagnosis. This is a blip in time. But when good news comes, we need to celebrate these small victories because they lift us up through the long haul. The better your attitude, the more successful you will be with anything. 

What I have come to learn--a light bulb moment if you will--about this diagnosis is to turn my thinking around about it and my health practices. Instead of thinking that I got cancer even though I practice all these healthy behaviors--how about thinking how strong my body is to defeat this disease. My blood work is amazing. I show no signs of the disease except in my tumors and scans. I have my fitness and my mental strength, great vitals and an amazing can-do attitude (when I haven't buried it under self-pity). Yes, my history of auto-immune disease makes me more susceptible to lymphoma, but this is not anything I can control outside of what I do. It's been insanely frustrating to read all these books about getting away from the Standard American Diet and avoiding processed food, eating clean and organic and avoiding chemicals and pesticides...Etc, etc, etc. Well, I do all this and this still happened.  It can still happen to me or to anyone else In this same position. I'm learning to think of it in terms of how healthy I have made my body to defeat this disease. Over and over again if need be. You see, I am starting from the top of the mountain in facing this disease, not the bottom of this hill. 

Sometimes when we change our mindset about the situations we are in, we can move from feeling defeated to feeling a warrior. Attitude completely determines perception of events. My attitude is bigger than my cancer. Sometimes a positive attitude makes you David over Goliath. 

Wednesday, October 29, 2014

Day 21: Three Weeks. I Want My Mama

I don't care how big you get in life, there are days that all you want is your mama.  Yesterday was that day for me.  If you've been following my blog, you know I've been having pain since my surgeries.  I really try not to talk about it much because I know all the talk is just plain wearing on both me and my friends.  Who likes the doom and gloomy friend?  So, I keep it in check, or I blog about it.  :)

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

Day 20: you've got your good days and you've for your bad days

I just returned from a pavement pounding, fierce walk. 

Ten days post-op, some steps hurt more than others. However, I've yet to find any drug they've given me more effective in reducing pain, managing my mood, calming my anxiety, opening myself to prayer and releasing tension than exercise. I am thankful that while I cannot run, today's Christ Walk was a good walk. 

My mood has calmed. Not so much before I left. I was an irritable, anxious, pain filled mess that was frustrated right, left and center. 

Cancer is killing one of my friends. Cancer killed a friend of a friend. Cancer was making people miserable. Cancer makes my hands shake and my body ache. The information on the internet was trying to leach my resolve to be a warrior and remember I said I was still in pain. I never see things clearly when I am in pain and we are having a hard time managing my tumor pain. Ironic since two weeks ago, I didn't feel much of anything. The surgeon  thinks the surgery might have stirred things up. Yet another thing to discuss with my hematology-oncology (hemoc) doc. The list is getting long. 

But all the information on the internet was overwhelming me and scaring me. It's hard to find resolve when you see so
much negativity. So I decided to follow the advice of @kriscarr and start a cancer posse. These are the gals I can unload on and these are the gals that will do my research for me. I've told them I need to hear that I will survive and I've got a much better chance than 10 years. I need 30 or 40 years. That's not asking too much is it?

Also weighing on my mind are the results from my bone marrow biopsy.  Waiting has never been my forte. It seems God continues to try and teach me patience.  I fear I am a hopeless cause. Waiting, wondering and being unable to make plans drives me insane. 

Hence my irritability. I'm not depressed, I'm pissed. But at least when you are pissed, you feel really alive. Being angry is a very tangible thing to deal with. Being angry helped me attack my walk and made me feel almost normal. In spite of the pain, the frustration and anxiety, I walked almost four miles. 

It felt good. I might not be running any races any time soon, but I've got a goal to try and make it 10K steps per day. These steps will make me stronger and better ready to take on the chemo. And maybe next year, there will be a race to conquer. It will be nothing compared to cancer. 

Saturday, October 25, 2014

Day 18: We Are Groot


My son's godmother wrote me this week and said, "Girlfriend, it is time to stop feeling guilty."

She is right. 

Guilt, when there is no transgression, is a wasted emotion. I may never know the why of my cancer. I may never understand this season and I may question God's plan for me during this time, but there is nothing to feel guilty about. 

The guilt was weighing down my fighter spirit. And I am a fighter. 

You see, even though I still cry; even though I have pain; even though I have my moments of distress and anxiety, this time has shown me that I have so many amazing people to fight for. My beautiful children, my amazing husband, my awesome family and my phenomenal friends. I have been infused with the spirit of all these amazing people. I do not believe my time here is done--for whatever reason, I have been challenged again by my body and again I will make it healthy to do God's work in the world. I would not have this attitude if I did not have all these amazing people in my life telling me I can. 

My buddy Louie calls this, "we are Groot."  Together, we are growing into a new tree. We will do this together. There is no "I" in this battle. I am not in this fight against cancer alone.  This is not just about me. This is about we and what we will do together. 

This togetherness is what I think God means by a community of believers. We have a bigger "church" going on than a brick building when together we are lifting each other up in love. 

I once wrote a blog post about the greatest gift you can give someone with an illness like cancer is to tell them "I believe you can conquer this. I believe in you."  It's true. We do far more together and are able to accomplish so much more as a community than we can ever do alone.  When we believe in each other and the power of the Holy Spirit to work through each of us, we are building something so much stronger than cancer or any other illness. 

So, while the future will have it's ups and downs for me, and I will still question: Why?  When?  How?  And I'm sure I will have days where I cry and gnash my teeth, I have hope. I can't say that I don't feel guilty--it comes and goes--but I have hope, because of you all. 

We are Groot. 

Wednesday, October 22, 2014

Day 15: Goonies Never Say Die

It's 3 in the morning again and I cannot sleep.  I'm beginning to hate three in the morning  Anyone who knows me well will know how irritating this is to me.  I like my sleep and I rarely have issues with sleeping.  Not so much lately.

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.

UGH.

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

Day 13: humor. 10/19/2014

Everytime I look at my husband, I want to apologize for this mess we are in together. When I start apologizing and falling into the "I am so sorry" and weeping mode, he gets sincerely annoyed with me. 

First off, it's probably a little demeaning when I apologize for something I cannot control. It's also probably a little insulting since he takes his marriage vows very seriously. Sure, I bet he would like to take this from me, but he has vowed "in sickness and in health" and has not wavered. My husband is my rock. I know I am never alone with him by my side. In some ways, his journey is more difficult than mine. As my priest reminded me, Treb now has to pick up the pieces of what I physically cannot do and often remains steadfast when I am too emotionally drained to deal with more. He has had to take on my household chores, the kids, taking telephone calls and answering multiple emails and going to the grocery store. All of these things are things he hates to do, especially talking on the phone and going to the grocery store!  Not that we keep count but the dude will have so many kitchen passes by the time this is through he will be able to trade them in for a boat that he so desperately wants. :)

All of this leads to a litany of "I am so sorry" in my brain. The first time I said it, he swatted me with the kitchen towel as he was doing dishes. The second time I said it, he gave me the eye ball. And the third time I said it, he told me every time I said I was sorry he was going to go out and buy himself a new x-wing miniatures figure. 

You see, my husband loves to play tactical board games. His newest favorite is the Star Wars X-wing miniatures game. He may be a little obsessed and before all this started, I was getting seriously annoyed with the frequent packages from amazon with a new ship for his collection. 

So I really need to be careful with my "sorry" comments. In one way or another, they may come back to bite me. :)  or at least if I am weak, he will be getting something good out of my moment of self-pity. 

The force is strong with that one. 

Saturday, October 18, 2014

What pain will do to you.

I feel terrible. Pain is such a discouraging sensation. When you don't feel well, it's hard to see greener grass nI've found that I can be trucking along with all the upbeat positve vibes in the world and my usual "can do" attitude and then the fear takes my breath away along with the pain. 

It's a very physical sensation. My lungs don't feel as though they can fully expand. It hitches in the back of my throat. My heart squeezes tight and I am overwhelmed with the wrong type of thoughts. My eyes bead with tears and negativity overwhelms me. 

The creeping fear that I won't beat this sinks into my mind. My whole self feels covered in a black malaise. A cloak of everything that is not me feels like it takes over. And I worry that I will kiss my children good bye on a death bed. I do not want this.  I am at a constant battle with myself of placing all my trust in God and trying to control the outcome of this season. It is an impossible battle that rages in my heart. 

I can also tell you that pain is a conduit to this fear. When I am hurting it's far more easy for the bleak thoughts to take over. At these times I reread the notes that I have been sent to lift me up and remember that I am stronger than all this. I have angels watching over me. I know God knows the petitions of my heart (I have been a broken record about them). I know I must be brave. 

But some nights, it's really hard. 



Endorsements for the Christ Walk program

In the midst of all this craziness, I am still excited about the book "Christ Walk" being published this December. It's my first journey with health and fitness. Christ Walk 2 will be about my new journey with cancer and fitness. My beliefs on health and the body have not changed because of cancer. I will continue to Christ Walk. Read more endorsements below:

“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.

––Carrie Graves, Canon for Communications, Episcopal Diocese of Upper South Carolina and former president of the Episcopal Booksellers Association

Day 11: 10/18/2014: Don't Play the gambling game

I hate surgery. I hate coming off the anesthetic. I am one of those people that gets sick off of anesthesia, and once it starts, it is really hard to stop. My whole body aches as though they dropped me off the operating room table. My neck and back spasm from shielding my incision site.  And I absolutely loath not being able to do anything. I don't sit still well at all. It makes me a grumpy patient. 

But it gives me lots of time to think and write. And it gives me the time to think through some of my private guilt over the cancer. 

You see, with my previous history of chronic disease (asthma, hearing loss, auto-immune disease, etc) I thought I had paid my Heath care dues. I thought that the burden of illness on my body had been paid in full for a lifetime. I have this human weakness that each of us have our list of tragedies and they all balance out in the end. You see, in my mind, I have played the percentage game and statistics game and assumed that the likelihood that I would get cancer or some other additional disease was very small. In the statistics game, I'm an outlier, an aberration, someone where the numbers just don't add up. From the numbers game, I really shouldn't have cancer. 

And this made me a little cocky about my health. Sure, I continue to balance the management of my chronic disease with a healthy lifestyle, but I had in my mind that this was my trial. I had paid my dues, survived and become stronger and more deeply involved in my faith as a result.  God had worked his will through me and I was good. 

I could look at a group of people and think that it would be someone else that would meet the statistic and not me. This makes me feel shameful because it is a terrible way to think but it was my weird, twisted way of dealing with an ongoing chronic illness. Someone else would have to pay the disease check because I had already paid my portion. What a stupid way to think on my part. 

The truth of the matter is that the body is weird. It does weird things without reason. Different people react to different pathogens and viruses and bacteria. Sometimes the body's response is illogical. Sometimes it just does make sense or fit
the statistics. Bad things sometimes happen to good people without reason. 

I've had to work through the realization that this did not happen to me because I am a bad person. (And just so you know, almost every cancer patient has had this thought even if fleeting--what did we do wrong to have this happen to is?). This did not happen because I have been unhealthy (if anything, the life I live has allowed me to live with this cancer for awhile and not have side-effects or symptoms).

This happened because sometimes crap just happens. There isn't a checklist of who gets what. We are all given talents and burdens commensurate with what we can handle with God's grace. In this time of my life, God is holding this together for me more than anything I've done for myself. 

It has also taught me that gambling with statistics is just a stupid way to approach the thoughts about my health and it set me up for such great disappointment. Sometimes, things just happen. And in my case, I am young (relatively), healthy and strong, and I have an amazing family worth living for. This isn't he end of the world for me. I really don't believe that God's work for me is done in this world and I am working very hard on trusting that God has a reason for all of this, even if I don't understand myself. 




Friday, October 17, 2014

Day 11: 10/17/2014

It's three o'clock in the morning. I cannot seem to sleep. I think I've mentioned it before but I really cannot stand hospitals or doctors as a patient. It's a terrible irony for me though that I love working in the healthcare field. And for all that I hate being in a hospital, my care has been fantastic. 

Yesterday was a day is prefer not to repeat any time soon. The bone marrow biopsy was a breeze thanks to sedation. My appendectomy was a breeze I'm assuming as it's no longer there. 

It's the recover period that bites. They told me I got sick between procedures, although I have no memory of it. All I recall was awakening in excruciating pain and getting sick. It took forever for them to get it under control. My body simply does not like anesthesia. 

I have new respect for my friends that had c-sections. You cannot laugh, sneeze or cough without excruciating pain.  And I find it ironic that just two weeks ago I wrote on loving your body, scars and all as the blueprint of your life on your skin. I've got dive new one's to embrace with my lot. No bikinis this year. 

But through it all I've been lifted by people I know and don't know. I've felt the prayers from around the world. I am wrapped in a prayer shall from the ladies in my church. I have Episcopalians, Catholics, Methodists, Presbyterians, Lutherans, Baptists, a Buddhist and my Jewish friends praying over me. Illness is the great eccumenical event.   I'm not picky where the prayers are coming from. I know Hod hears them all. 

And I am wrapped in care. Now, begins the road to recovery from step 1. Step 2 in this cancer process will bring a whole new set of experiences and prayers and trials that I'll share. But for now, I feel like I've made it through a big one. 

Cannot say thank you enough to all of you who are helping a long the way. 

Anna

Wednesday, October 15, 2014

Day 8: 10/15/2014 Answer this ONE Question

One week into this journey and I need an answer. What do you tell your child when they ask you if the cancer is going to kill their mommy?

Where is the guidebook, the parenting book, the answer that won't scar them for life, is a lie, will make them hate God, or fill them with fear.

There is no RIGHT way to handle this question and there is no parent that has been in my shoes that this question crushes them.  All the love in the world cannot promise my children that the cancer won't kill me.  The probabilities are not in the favor of the cancer winning,  and as I told them, I could die tomorrow walking across the street, but really, I cannot promise my children that this won't kill me.  No one can promise their children that they won't die early. 

And they know it.  And it fills them with fear.  And they hold it in.  My kids are the warriors.  They look in my face and they know I am afraid and they know I cannot give them the pat answer they want.  Of course we laugh at it.  Their mommy is too stubborn to let cancer kill her.  But I cannot promise that.  I cannot say to them that if I die, it is God's will, because I do not believe that.  This journey isn't just about me.  It is about this disease and how it has infected all of us as a family. Of all the stupid stuff I've come to terms wth over this week, this is the one question that stops me in my tracks. I bumble through my responses, I hem and I haw and I answer somewhere between "no" and "mommy will fight this tooth and nail." And yet none of my responses feel right. 

Every parent simply wants to raise their children, see them succeed, grow old, marry, have their grandkids and find happiness.  No parent wants to leave their child, at least not me.  And I'd give anything not to have had that discussion or hear that question from my babies.

How would you answer it?

Sunday, October 12, 2014

Day 6: Today I felt Normal

Today was a priceless, priceless gift. Today I felt normal.

 A perk of attending a wedding in an old duty station was the opportunity to see dear military friends. We spent the rest of our weekend in the Pacific Northwest finding respite. Soon enough, hospitals and doctors will return, but for this little sliver of peace, we have been able to laugh, smile, love, hug, share and be with friends away from the cancer. Sure, we have talked about it, but it didn't rule the weekend. For the first time in the last five days, I didn't feel defined by my diagnosis. 

We spent our day hiking in one of God's most precious creations: Mount Rainier. Both Treb and I have a special love for this mountain from out time spent at Fort Lewis. I climbed to Camp Muir when we lived here which was one of the most physically challenging feats I personally have accomplished in my life. I love that memory of climbing to Camp Muir. At 10,000+ feet in the air! your perception of everything changes. 

So going to Rainier for me was very healing. Hiking to Panorama point showed me that my body was still strong. I could still do this.  Each step affirmed me as a person. Each smell cleared my body--I felt as though I was breathing in the spirit of the world and the spirit of God. The sounds resonate with my heart. I smiled without feeling as though it was forced or as if I needed to show everyone that Iw as ok. I was ok. 

 I loved almost every moment of it, except the massive meltdown my little girl had half way up the trail. (Her scream was so piercing you could hear it at the end of the trail. One old gentleman walked back down the hill to give me chocolate she was screeching so loud). This moment reminded me that my sickness doesn't effect just me. It affects my babies. For that I am eternally regretfull. I would shield them from every moment of it if I could. Their world has been rocked as well. 

But as we settled down and found our calm, both of us continued on to make it to our final destination at panorama point. The view was completely obscured by fog. We had made it, but couldn't see the view. Such are many things in life. You can learn a lot from a mountain. 

But as we descended back, the clouds parted and there she was. If you've been to rainier, you know exactly what I am describing. If you have not, when the clouds part and Mount Rainier shows her magnificence, everything else seems smaller in comparison. I told  Treb that he needs to start praying as hard for me to get well as he prayed to see his mountain this weekend!  When Mount Rainier shows herself, you feel blessed. 

And I've been blessed this weekend. From being a part of a beautiful wedding, the hospitality of great friends and a wonderful day hiking on Rainier, I found a sense of balance and peace I sorely needed. I'm sure it won't last, but it was a greater reminder that there can still be great days even in the midst of darkness. 

10/11/2014. Day 5: In sickness and in health

I'm not sure if you call it irony, or if it's just an awareness of the passing of time and how it plays out in your life. Maybe it is just an awareness of the passing of events when you seem hypersensitive to important things in life. But my life, and my health converged this weekend. 

Anyway, We came to Seattle this weekend to celebrate the wedding of a dear friend to a wonderful, wonderful woman. Ironically, at the time my lymphnodes were beginning to swell and grow with cancer, we were on our way through the southwest and were stopping to see these friends at their new duty station. Unknown to us, the night before we had arrived, they had finally gotten engaged. We were some of the first people to get to celebrate with them on their new engagement. Over margaritas, red chili sauce and sopapillas, we toasted the joy of two fantastic people finding each other. I remember how happy I was that Jason had finally found love. We were so excited for them. 

As summer unfolded and I began to go through multiple tests to figure out what was wrong with me, we had continued to correspond with Jason and Sarah about their big day. We still had no clue there was cancer. No one really thought I had cancer, let alone me.  Keep in mind, overall, I still feel fine. 

I digress, I had told Treb long ago that when Jason finally tied the knot, we would be there. We bought our tickets and got the kids excited about attending their first wedding. Jason and Sarah had asked us to do one of the readings during the service and we were honored to be included in their day. I love to read the bible aloud out church. I can think of no better way to be a part of someone's wedding. 

Three days before we fly out for this great event, I found out about my cancer. I looked at Treb and told him I couldn't get in front of a group of people and read God's word. There was no way the words would come out without me crying. And at the end of the day, I didn't want Jason's wedding to be about me. I wanted it to be about their love. We called Jason to tell them we would still be there, but that Treb would speak for both of us.  My heart would be 100% there, if not my voice. Once again, I felt a certain amount of shame and guilt that I couldn't control myself, but I knew this was the right decision. I did not want this day to be about me or about cancer. 

And as Treb stood up to read from Isaiah, I cried because I couldn't do it myself. I cried because it was a wedding and I cried because my heart is still so very raw. As Jason and Sarah pledge to love another through sickness and health until death do them part, I could not stop the stream of tears. I turned to Treb and simply said, thank you. I'm sure when he married me 16 years ago, he didn't think he would really be loving me through sickness, but he is. And as Jason and Sarah start their life together, I know Jason will love her through sickness and health as well. 



Day 4: a Litany

10/10/2014. Day 4: A Litany of God bless

I actually woke up in a fairly good mood. I've been sleeping well since starting the Xanax. It's a blessing. I keep waking up expecting to feel sick. Although emotionally bruised and battered, I don't feel bad. I am strong ( burpees pay off), my energy level is over all good. I don't feel sick.  I'll randomly crack jokes.  I keep asking the doctors if they are sure they have diagnosed me right. I mean, cancer patients usually look and feel sick. I don't really look or feel different. At least not yet. I'm sure I'll feel differently when they start pumping my body full of poison. But for now, this really seems unreal. 

I tried to have a normal day today. I got up early to go to work. I usually enjoy work and it can be cathartic. I don't mind the mundane. Normal is good.  I did have a moment when I totally went off on someone for bringing up stupid in the middle of what I was trying to craft as a normal day. In my defense, I've been assured the person WAS being stupid, but I generally don't go off on people. My tolerance for stupid right now is low I guess. I digress, in the middle of trying to find normal, to work, to calculate survey results and provide an analysis on public health impacts, everything was working against me: time, my computer, my brain, technical upgrades to the software I use, people and red tape. I was a slow burning fuse. And then I got a call to go back to the hospital. 

I was called back to the hospital to fit my prep testing in today.  It wasn't going to wait until next week as planned.  Next Thursday I will get a CT guided bone marrow biopsy under sedation and a full appendectomy. I've just realized that running will be out for awhile. I am annoyed. To hell with burpees. Those are tabled too. My Christ walk goal is to get as many steps in each day as I am able. It's a one day at a time sort of life I live these days. 

Anyway, so I am back at the hospital. Third time in three days. I'm a nurse and I hate hospitals.  They bring back every memory of being a sickly kid.  I want to apologize to every patient I've ever had over the sheer indignity of the medical experience.  I like to think that I was a good nurse, but I still want to apologize. The medical environment is so hard. I mean seriously, as a staff member, you know your way around a building, as a patient, it's a maze just as foreign as Timbuktu. 

I've had amazing doctors, nurses and support staff, but I've also given my full medical history to about ten people. I've been poked, prodded, stripped down, examined and looked with pity as they read my age and diagnosis. "However did you think you had cancer?" they ask.

I never thought I had cancer. Some days, I still don't think I do; Except I have this pesky lump on my left clavicle that reminds me they are right. :(it's begun to hurt. I think it is my mind. 

I'm 38. Thirty year olds shouldn't have cancer ( for that matter NO ONE should have cancer--if I haven't said it before, I'll say it again, this cancer crap sucks. Let's not sugar coat it--this stuff doesn't belong in ANYONE's body).  This isn't just about me. This is for every single person that has it. We all have one heartfelt, longing thought: Go away and leave me and my family alone. Forever. 

Every time I've been at the hospital I've had at least six people ask me if I have an advanced directive or living will. I fell a part on the first lady who asked me. Poor lady--I made her cry. Thirty year olds shouldn't need advanced directives and living wills. That sort of question is just plain wrong. I mean it's right, but just wrong in the place where I am in life and so I bawled. And then they ask me if I'm an organ donor--which I am proudly--I'm just not ready to give them up yet--not that anyone is going to want them after this. *sigh*

This medical world we live in is so sterile. It's only made human by the kind people that work in this bureaucracy  of healthcare...they are the only things that bring a humanistic sense of something warm and friendly to an environment that strips you of all that you are. God bless humans for being a part of that sterile world. 

I don't miss working the clinical setting, but I know if I ever go back, my patients will never be just patients to me ever again. They are people. People in a situation that strips them of any sense of normal. Any sense of dignity. Any sense of feeling they are in control. Between the decor, the questions, the crap on TV, the waiting (waiting, waiting and waiting), the smell, the fake lights and technology-- everything screams that nothing natural goes on here. Except the people. The people give it some sense of I am not alone. 

God bless my nurse today Wendy as she let me put my head between my legs and breathe as she asked my questions and I almost hyperventilated. God bless Monique, the woman who joked with me about getting a tattoo as she looked me up in the computer. God bless Theresa who cried all over me as I cried all over her when she asked me for an advanced directive. God bless Dr. Jax who promised he wouldn't make any mistakes in my surgery. God bless Dr. Ludwig who called me in prescription for Xanax without making me feel weak for needing help. God bless Sherri who has arranged all my appointments. And God bless Dr. Johnson who showed me how to be objective about my cancer in the middle of the emotion. And y'all, pray for a good case manager for me who will help me seamlessly transition my care from Kansas to Virginia. 

God bless my friends--I cannot say enough. And God bless Treb and my kids and all my family. In the middle of this cancer crap--I am blessed. 

Thursday, October 9, 2014

Day 3: coming out of the closet

10/9/2014. Day three: Yesterday I came out of the closet. The cancer closet. I wrote a pretty raw blog about my diagnosis. I wasn't sure how it would be received. I know sometimes that my Christ Walk posts can get to be too much for people. It's ok. I get that. But I find writing therapeutic and this was my time to chronical the good, the bad, the ugly and the beautiful. 

My aunt used to tell me I cried so prettily. If only she saw me yesterday as I scrolled through the overwhelming love and support sent to me via text, calls, emails, messages and posts. I couldn't catch my breath at times. I sobbed. I cried. I felt unworthy of the love that was being sent. I am overwhelmed. Those hot spots under my cheeks seem to have taken permanent residence. I do not feel deserving of such love. I am humbled that somehow I have touched so many people that they feel called to touch me and my family back. You all have done for me what I asked that I could not do myself. You have prayed for me with words I cannot articulate. I don't know how to say thank you in any possible way but thanks. I mean with all the crap in the world, there are so many awesome, loving people that make it an amazing place. There is hope for the world with all the amazing children of god who have touched me. The news shows can take their negative crap and shove it. Amazing, beautiful and miraculous people live around us far more than the crap that is highlighted on a daily basis. You all are the hope of the world. 

The most amazing thing happened from the messages I received. I finally found hope. I wasn't feeling hopeful before. I couldn't see past the shock, the misery, the anger or the despair. I was fueled yesterday. And that is an irreplaceable gift. I heard stories of those that have been through the same thing as I and have conquered their cancer. I have heard positive statistics and I have heard God's love. I'm still not happy with my lot. I would wish it away in a heartbeat and I still pray the doctors are wrong. But I'm wrapped in the loving care of my friends and family and for that, I cannot thank you all enough. 

Yesterday marked the first trip to the oncologist. The vampires descended on my veins. I was pumped with radioactive isotopes for a PET scan and learned that my cancer is further a long than I had hope. It has snuck into my neck, chest and abdomen. Next week I head in for two surgical procedures: one a bone marrow biopsy to see if it has invaded my bones and a second to remove my appendix. We are working details or figuring out my treatment plan and how to get care immediately upon arrival in DC. 

I do know the prayers and love make a difference. Please don't stop. God hears you even when my own prayers are feeble. I have not lost faith. I still believe fiercely in God. I am simply so angry at this that God is the only thing strong enough to withstand my anger and still tell me it will be ok. 

Thank you. From all that I am and all that I will be. Anna. 

Tuesday, October 7, 2014

I am so very angry at God

Friends,  I wrote this yesterday. I've sat on it for a day and have decided to go ahead and post this. I've decided that this will be Christ Walk II: My journey with cancer. 

Day1:

I just found out I have cancer. My body, as usual, has betrayed me. An angry fire lives under my skin and I fight the tears that try to leak out. I am hot. I am cold. I am sweating. I shiver. I feel like I may throw up. 

I am so pissed right now. I'll ask your forgiveness for my crudity later but this is raw. I am angry. Furious with God.  Furious with my body and furious with life. 

What did I ever do to deserve this?  I don't understand how living a clean life, following the good book and trying my damndest leads me to this.  I have more questions than answers. I am in a stage. I hate being in a stage. I am a statistic. I hate being a statistic. 

I do not want cancer. And with all apologies to my friends with cancer, I don't want to be labeled a cancer patient. I can say with 100% confidence that I am sure they don't or did not want to be either. This cancer business is seriously inconvenient. 

I do not want a litany of doctors or visits. I have been there, done that. I do not want this journey that is set before me. I do not want this season. 

I want a normal life. I want to raise my children. Grow old with my husband. I want to travel and eat good food. I want to see my grandchildren and see my kids' marriage and graduating from college and being successful. I want a normal body. I've had an abnormal body my entire life. I hate my abnormal body. 

I don't want to hear that I am a warrior or a conqueror or how tough I am. I have been there done that. I'm ok with a drama free life. I'm ok with the status quo. I'm ok with the boring. 

And I feel utterly betrayed by God. I realize in part of my brain how silly this is but this is how I feel. I feel like I've done something wrong and that I am being punished for some unknown deed. 

I am pissed. My cheeks feel like frying pans are sitting on the hard shelf of my cheekbones and my head throbs. I am not ready for this. I have follicular lymphoma. As far as cancers go, it's probably the "right" one to have. It is treatable and mostly non aggressive. That doesn't make me want it more. I wish I could turn back time and not pick up the phone with my surgeon. I am not ready for this. 

But I will be. Let me grieve. Let me get angry and let me find my fighting spirit. I will win this war against cancer. I will find my spiritual equilibrium. I will find the glass half full. 

But until then, I will grieve and I will be angry. Bear with me on this new journey I am beginning. 

Part II: My Body the Battleground

My body is the battleground of my war with health and I have the scars to show for it.

My health has been a battle for me most of my life.  Not a war with anything life-threatening, but a chronic, nagging, ongoing battle against chronic disease.

My body is riddled with scars on my head, chest, arms, legs, back and stomach.  I have been asked if I was burned, abused, obese, or hurt myself.  They are a combination of red and white and pink and purplish slashes across my skin.  Sometimes they ache.  They are stretchmarks, and surgery scars from the effects of high dose steroids and chemotherapy drugs I took as a child to try and prevent my hearing loss.
They often make me hate my body.  Most days, I am a warrior. I am more than the skin I wear.  Other days, I get angry, and I wish and want for something else, something more, something smooth and pretty and not ugly.  I get angry sometimes about the battle between what I want to be able to do with my body and what my body is able to do.  I secretly wish for a different body just like everyone else.

My children have reached out to my scars and asked me what happened and I have told them.  Their reply, "Ooh, texture!"

I have told my husband that sometimes my scars make me feel ugly.  His reply: "You are beautiful, they are battle scars."

I have told God, that I sometimes wish for a different body.  God's reply: "You don't need one."

I am who I am, scars in all.  So, if I wear a bikini, or a short skirt or a tank top.  It's not to be immodest, or sexy (well, maybe for my husband) or provocative;  it's to thumb my nose at my body and define myself as more than the scars that make me, me. Sure, you'll see me hanging out with lumps, bumps, scars and all, but it's my way of overcoming this shell I have and showing my kids that the outside doesn't matter.

Your shell doesn't matter either.  It's what you do with it. I'd really like it if we all stopped beating ourselves up over the scars we carry.  People love us, scars and all.  They are the texture of our life.  The road map of what we have accomplished and what we will continue to accomplish. My scars are my testament that God has lifted me up far higher than I could have done on my own through what has happened to me.

Will I continue to have days where I wish for smooth, unblemished skin? Probably.  I am human.  I slip back and want for something I don't have, nor will ever have, but each day I have worn my scars, I am reminded that I have overcome something that for a moment of my life defined me like nothing else.  I was marked, and I am different because of it. 

You have been marked too.  You will be different as well.  These life changes mark us as Christ's own forever.

Monday, October 6, 2014

Part I: An Ode to My Mother's Whiskers

Opening Disclaimer:  This post is going to be a little outside the norm of what I write.  It is supposed to be humorous. Please enjoy with humor in mind.  :)

About 10-15 years ago, I was home visiting my parents.  My mom was sitting in her recliner rocker and we were visiting.  It was good to be home.  I love sitting with my parents in their living room and just talking.  We catch up on things we've wanted to say forever, but some how fail to do in the busyness of life.  Going home is always good.

As we were sitting their chatting, my mom started to rub her chin.  And she got kind of silent.  And you could see she was fidgeting with something on her neck/chin area enough that I said, "Mom!  What ARE you doing?"

My mom:  "Anna, I have whiskers."

Me:  "You do not have whiskers.  There is nothing there."

My Mom: "No really.  I can feel them.  Get me my tweezers."

Me: "Ew!  No!  Do that in the bathroom!"

My Mom: "But I need you to help me pluck them."

Me: "Eh.  I love you, but not that much."

My Mom: "Don't let me be that old woman with three whiskers hanging off her chin that no one will do anything about."

Me: "Mom! You DON'T have whiskers.  Look, I can't see anything!" (I really did walk over and check out her chin)

My Mom: "But they are THERE!  I can FEEL them!"

Me: "Mom, It's in your mind.  You are beautiful to me as you are.  There are no whiskers."

My Mom: "Just promise me you won't let me be an old lady with whiskers."

Me: "Ok, Mom, but you don't have whiskers."


Let's fast forward about 10-15 years.  I'm sitting on the couch.  Minding my own business.  I cannot remember if I was reading or watching TV, but I somehow touched my chin.  And I touched it again. And by God.  There were whiskers.  I couldn't see them, but I sure could feel those suckers.  And as I looked into the mirror, they are in the same dang place as my mother's "whiskers."

Thanks for the genes mom. Come again?????  What happened here??  Really God, what is the evolutionary point of whiskers?  How can this possibly contribute to your grand plan?  This makes no sense whatsoever.  #Iamnotahappycamper

I don't think of myself as a vain person, but these whiskers things have set me off.  I know EXACTLY how my mother felt 15 years ago.  It's a coming of age thing.  Or rather, age is coming quicker than I really want thing.  It happens.  The whiskers are there.  They are another example of my body is doing its own thing while I have other plans for it.

And at the end of the day, my whiskers really aren't going to make me any other person than who I am.  And I can guarantee you that none of my friends notice them.  But they are there.  The reminder that while you cannot see them, I can feel them and they remind me that I am changing.

Whiskers are God's plan to keep us humble.  Just as we get comfortable with our bodies, something happens and changes that reminds us that this is just a human shell.  It's a reminder not to focus on the mundane part of our bodies, rather what we can do with it, not what it looks like.  Our bodies are weird.  They have a mind of their own and they will do things outside your will.  We can try to exert control over our bodies that we might not have and be miserable, or learn to live and love the shell we have.

In part II, I'll discuss what to do when that shell is scarred.  Tune in tomorrow for the second part of learning to love the shell you have.

Anna