Homesick

Is it weird to do an update here? Now? It’s been almost 2 years since my last post. (My mind is going to some movie scene “Father, It’s been 2 years since my last confession.” But I’m not Catholic, so I’ll try to quiet that voice and get on with writing.) And I thought I'd add a recent picture for posterity (ignore the dirty dishes in the background).

I find myself in a quiet house this Friday morning…always a dangerous place to be! It is in the quiet that those inner voices begin to chatter…the ones that ask the tough questions. The ones that remind you of where you have been and ask you where you are going.

And so, I come back to writing... Again. Consequently, I came back here. To this blog. And re-reading a few of my posts, I find it strange to be standing now, in what was then, an unknown future. I read and am comforted again. It seems like I have come so far…and then…it seems like I am living in many of those same places STILL.

Still asking for healing. Still thankful. Still scared.

Today, I get to tell my earlier self that I am able to do so much more. I am walking without assistance and able to climb a stair or two. (Most people wouldn’t guess there is anything wrong with my body.) I can tell her that the boys are doing great! I can tell her it’s been a good 2 years of family and friends and Jesus. I can tell her most of all, that my life is not over…it is still unfolding.

There is one thing though that is unexpected. Something that has changed. When she broke so bitterly…when I broke so bitterly…my heart never healed. My heart is always a little wounded and open and bleeding. I am more sensitive to the pain around me and feel it all more acutely. And some mornings…like this one…all I can do is sit in it and wish I could change it…and when I am feeling completely insufficient…I pray...

For you who are hurting, I pray for comfort.

You who are wounded and sick, I pray for healing.

You who are lost, I pray for revelation and direction.

You who are scared, I pray for courage.

And you who are bitter, may you find forgiveness.

And you World! You, World! You are groaning too! And so is my Spirit.

And so are we all! We long for something more! Something greater!

Maybe this morning, I am just feeling a little homesick.

Homesick for you Lord.

And, so I pray for myself. I pray for the homesick. May we feel you close today.

May we trust in your goodness and love in the brokenness.

Amen

60 Days

It is now 60 days post transplant! It is one of those markers that for me means one less medication and being done with my hepa-filter mask in all circumstances.

My mom has just left after coming out to help us again. She took me to my driving appointments, practiced in the neighborhood with me, and got me truly independent! So, 60 days and I am back driving again for the first time in a year!

60 days...

My mom has left, the meals have stopped, Sam is working full time again...the house is quiet.

60 days...things are starting to feel like a new “normal” with dishes and laundry, kids to pick up and homework. I am starting to walk around the neighborhood with my canes and do my stretches.

I have come so far! God has answered so many prayers of healing. I am so grateful, when I think about my paralysis, wheelchair, and central nervous system issues that have all disappeared. And still, I hope for more. Some days I feel like I am being greedy for blessings. Some days I feel like God is done with me. Some days I still feel frustrated with my neuropathy and want it to all go away...now.

So, I keep asking and praying for more healing. I have thoughts like, “Well, I can ASK can't I?”. And “God is not miserly.” “David describes his cup as overflowing.” And “God has been merciful to me this far, why not further?” I don't know who I am argueing with... I know I don't deserve the blessing I have already received. I don't deserve the “more” that I am asking for.

I guess that's the rub...to know I have received so much already that others haven't and still be wanting more healing. The conflict is within me, not with God. He is good and generous. He is abundant and powerful. He can heal and bless and do miracles all day and it doesn't detract from anyone or anything else he is caring for. There is no limit with him. He knows my value. He knows my doubts and fears and failings. He knows I am his child.

So I am back to where I always end up. God is good. He is merciful. He has a plan for me. I can trust in him. And, yes, I can ASK, because it is only by grace that anything of God's can be taken into my life.

The Lord is my shepherd; I shall not want.

He makes me lie down in green pastures.

He leads me beside still waters.

He restores my soul.
He leads me in paths of righteousness

for his name's sake.

Even though I walk through the valley of the shadow of death,

I will fear no evil,

for you are with me;

your rod and your staff,

they comfort me.

You prepare a table before me

in the presence of my enemies;

you anoint my head with oil;

my cup overflows.

Surely goodness and mercy shall follow me

all the days of my life,

and I shall dwell in the house of the Lord

 forever.

Losing My Hair

I am halfway there! I went through the stem cell extraction. It went well - I think. I started off strong with almost no reactions to the chemo. “This is going well.” I thought. “Almost too well...is it working?”. Then it hit hard and fast and all at once. Thursday, August 11^th, it all started to happen at once. A fever, a headache, and a trip to the ER. I ended up staying until Sunday – two blood transfusions later. My white blood cells, red blood cells and platelets had all dropped dangerously low. Interestingly, the blood transfusions can only take care of the red blood cells and platelets. My shots were suppose to get back the white blood cells, but it was a waiting game for when they would kick back in. I have never felt so sick or so tired. I was glad to be in the hospital. And then when my white blood cells came back up, I started feeling like myself again within the day! It was amazing how fast it turned around!

I think I was home one day before my hair started falling out.

It started like a bad dream. I would run my fingers through my hair and a HUGE clump would just come right out. I tried not to touch it. I tried to hold onto that hair as long as I could, because Oliver's first day of school was on Thursday! That was enough stress for him. I was trying to hold out until the weekend to shave it off. I made it to Thursday night :( What a tough time for my big guy....for all of us.

Let me be real honest here: I don't like being bald. I do not feel “pretty”...most of the time now. When I had my hair, even though I had the canes/walker/wheelchair, the port under my skin or hanging from my chest, and the “baby” weight I always hoped to lose, I still felt....feminine. I took a certain pride in that feature. I liked my hair!

Now...It feels so strange to look in the mirror and see a bald head. I am in search of hats and scarves. I am wearing makeup regularly for the first time – EVER! I did a little clothes shopping. You know what helped the most? Nothing!!! I tell you, it sucks!

Ok, seriously – my husband is helping me through this one BIG TIME!

As I was sharing my struggle with him, he recalled with disdain all the posters and magazines in the Oncology waiting room of these lovely looking cancer patients. “It is such a fake image” he cried out to me in his indignation! “Where are the pictures of the tired women, the frail, the sick.” Even the images of women who are sick have been plastered over with ligthing and makeup to maintain that message - “A Woman's Most Valued Asset is Her Looks”. No wonder I was struggling!

There is more to me than my health or hair or weight or clothes or job or whatever! I can sense it - a familiar “me” that is under all of that outward stuff. It is my heart and soul. The “me” that is eternal and uniquely created. Psalm 139 is often read regarding God knitting us together in our mother's womb. Here are a few other verses I pulled out that speak to me.

O Lord, you have examined my heart

and know everything about me. v.1

“Everything about me” is in my heart. All of the things God cares about are in our hearts. All of the important things about us are there – inside, not out.

You saw me before I was born.

Every day of my life was recorded in your book. Vs 16

God “sees” us. He knows us from before birth and sees and knows the entire course of our lives before we live it. He is the El-roi (God who sees me). He sees our circumstances, our hearts, our devotion, our rebellion, our pride, our surrender – all of it! All of us! I think the root of desiring to be beautiful is wanting to be noticed...to stand out as special. God NOTICES us!!! His attention is on us!

How precious are your thoughts about me,[b] O God.

They cannot be numbered! vs. 17

Even in all of the “seeing” that God does, his thoughts are not unkind. They are precious. They are loving. He thinks about me! How remarkable is that! The only one that can know me completely – inside and out - loves me! His thoughts about me cannot be numbered! His love is steadfast!

But sometimes you just want to feel pretty to your husband.

Today was one of those days! When I said goodbye to Sam this morning, we looked into each other's eyes and SAW each other! Saw the strength, the struggle, the togetherness, the love, the commitment to each other – and we smiled. And yes, I felt beautiful again!

Into the Unknown

Today I woke up, looked at the calendar, and started to freak out – this is happening soon! In seven days I start at Stanford! I don't even really know what I am getting myself into. They have a whole binder dedicated to give “information” about what to expect, but I really don't know what it will be like for me.

It's scary. The unknown...

I do better when I am “in it” than when I am anticipating a thing that might be painful, uncomfortable, or chaotic. I take some comfort that my negative anticipation of events are almost always worse than the real thing. Lucky for me I have these tattoos on my body that remind me my imagination almost always gets the better of me. I got them from my radiation treatment.

I was extreamly nervous about getting tattooed as I have heard they are quite painful. So I lay down on this narrow bed under the radiation machine. I'm looking at this picture on the ceiling of a cherry blossom tree (put there to induce feelings of calm). My heart is racing as they line me up under this lazer machine. They position me and mark me. And then...tattoo me so they can get the same alignment every time! I got 4 marks.

Ok....the “tattoos” are the size of a freckle. It felt like four little pinpricks...and was done! All of that worry and fear and anxiety - I felt ridiculous!

Well, I'm scared now. I have to talk myself down quite a bit. A big thing is just focusing on what's right in front of me and not getting too far ahead of myself. For today, that meant lining up childcare while my mom, Sam and I take our classes next week...Checking insurance coverage (again) ...Arranging appointments with cleaners...date for car interior detailed(I have no idea what is under the car seat)...calling the hotel(we need to be close for part of the treatment)...

In short – panicing.

I want everything to go just right. But this is not right! None of this is right! Do you know they are recommending a medic alert bracelet for me. I'm 41! I don't know whether to laugh or cry! I cry out to God – in all of it! And then...sometimes not right away...but...then...if I wait....if I focus on Christ and not the chaos....the calm returns and I find rest in Him.

I love how this pendulum of emotions is expressed in Psalm 116:3-7. I can identify with it so much.

The snares of death encompassed me;

the pangs of Sheol laid hold on me;

I suffered distress and anguish.

Then I called on the name of the Lord:

“O Lord, I pray, deliver my soul!”

Gracious is the Lord, and righteous;

our God is merciful.

The Lord preserves the simple;

when I was brought low, he saved me.

Return, O my soul, to your rest;

for the Lord has dealt bountifully with you.

For you have delivered my soul from death,

my eyes from tears,

my feet from stumbling;

I will walk before the Lord

in the land of the living.

I believed, even when I spoke:

“I am greatly afflicted”;

I am in one of those seasons. Yes! I am afraid and afflicted! And YES, I believe!

2 Weeks, Part 2: God's Timing

So my first week in rehab ended with Christmas. My second week ended with a release home on New Year's Day. To quickly sum up the last week: it was about prepping me with the skills to go home. An appointment with me spine doctor to check my incision and healing of my back, continued therapies and a heart change that was ready to be with my kids again.

I still felt worried! “I'm not ready!”, I thought. I want to walk out of here! I don't want my husband being my nurse: helping me in the shower, or bathroom or helping me dress. I was worried about the home physical therapy and whether it would be frequent enough. It certainly would not be 1.5 hours daily!

I can see in hindsight, that though coming home presented itself with many challenges: my kids needed me home, my healing still progressed, the changes in my relationship with Sam brought us closer and brought a new level of trust between us, and ultimately God knew what was best and what I could handle.

So back to today! I am anticipating a long awaited intake appointment at Stanford tomorrow. This will begin the process of getting my stem cell transfer started! I'm scared and excited. One of my biggest concerns is about the timing. Start to finish, I am anticipating about a 6 week process of taking the stem cells out to eventually putting them back in and looking for signs of engraftment (where my immune system accepts the new cells and begins to make new blood cells again). I will basically be isolated during this time, only going out to doctor appointments, and having a lot of hand washing and wearing masks in the house. This would be followed by approx 3 months of “being careful” of infections.

I think it will start soon. I also have 2 important dates that I want to be able to be present to for my son and family. The first is Oliver's entry into public school for the first time on August 18th. I have reason to believe that it might be a tough transition for him and I would like to be available to support him through it. The second date is September 8-13, which is Oliver's birthday followed by a church weekend at KOA where we usually celebrate his birthday. We missed last year and I am pretty determined that the kids WILL go this year:) I just would love to go with them: a long shot!

I am trusting God in the timing of all. I know my plans and how I would want things to go, but God's got the big picture with all of the moving parts, the needs of everyone (not just me), and what the future holds. His timing is good and I'm going to trust in it, even if it not mine.

Trust in the Lord with all your heart,

and do not lean on your own understanding.

In all your ways acknowledge him,

 and he will make straight your paths. Proverbs 3:5-6

Rough Times, Sustaining Hope

I am going to take a break in the recap of the past and share some of my heart for what is going on in my life today. It has been a sad couple of weeks as my family and I have been mourning the loss of my uncle. He died recently of stomach cancer after a good fight, and will be greatly missed.

At the same time, my mother (Uncle Nick's sister), step-father and nephew have all been here visiting. It has been good to see them and the cousins are full of commotion and fun all day long! It has been good to see them all together! It's been a good visit. Today they are all at the beach. For now I can't do the beach, so I was thrilled to have my boys go for the first time this summer! And I don't mind the house to myself:)

So here I am, catching you all up. Friday I will be going to my oncologist for a final check before transfering my care to Stanford. I will get one last week of infusion before going for my first check-in at Stanford on the 14th. It will amount to a 3 hour appointment in which I hope to get some questions answered. I still do not know when I will be getting the stem cell transfer done or what the recovery time is. It makes it hard to plan for me, my mom (who will be staying with us), and Sam (who will be taking time off work). I guess the not knowing makes it tough. It is also harder having a long time to think about it and read about it. It doesn't sound easy!

So the stress is getting to me. The neuropathy is getting to me. I'm having a hard time gearing up for this next big stage after 4 months of chemo. Please pray for renewed strength and joy as I am feeling tuckered out emotionally.

On the other hand I just want to get this thing done! So I am hoping it will start soon and be over soon! I would love to be over the worst of it in the next month or so!

This passage gave me encouragement last week:

So we do not lose heart. Though our outer self is wasting away, our inner self is being renewed day by day. For this light momentary affliction is preparing for us an eternal weight of glory beyond all comparison, as we look not to the things that are seen but to the things that are unseen. For the things that are seen are transient, but the things that are unseen are eternal.

For we know that if the tent that is our earthly home is destroyed, we have a building from God, a house not made with hands, eternal in the heavens. (1 Corinthians 4:16-5:1)

These are the two thoughts that keep me going. The first is that whether or not I make it through this trial or this affliction and live a longer life, I have learned so much and God has been shaping me tremendously through this. The second is that If I don't do so well with the treatment, I will be getting a new body in heaven. That might seem like a small comfort to some of you:) However, I have been thinking about heaven a lot lately. That might sound like a morbid thing; it really is not.

“For the things that are seen are transient, but the things that are unseen are eternal.”

Fixing my eyes on the eternal helps me not lose heart. “Three things will last forever—faith, hope, and love—and the greatest of these is love.” 1 Corinthians 13:13. Love never fails. It endures. Through life and through death. Moreover, God is love. He is with me. He is with my loved ones. My children and husband, my parents and sister, my friends and family. He is with those who mourn.

So, yes, the situation is sucky. But it could be a lot worse without the comfort and peace of knowing that the worse outcome - death - will carry me on to something better - eternal life. Just as importantly, I can trust the Lord with those I love and those who love me. I can hope for healing and surrender to a loving God all of the results, knowing his grace is sufficient for me.

2 Weeks!

I couldn't believe that after a spine injury that left me paralyzed, I was being sent home after only 2 weeks! Not only that, but it was decided just days after my admittance! I arrived on the 20^th of December. Just a few days in, and I was using my wheelchair, getting the hang of transferring on my own, and standing in the standing frame. I felt like I was being punished for recovering quickly. Still! I had read that a typical stay after my type of injury was 4-6 weeks. I was so upset with my insurance company! I wanted to fight it. No! I wanted someone else to fight it! I had SO much going on, that I just couldn't think about what would be involved to argue my case. So I prayed.

At first I prayed to stay longer, feeling that rehab was were I HAD to be. And I asked others to pray with me. I had faith that God would take care of me. My physical therapist was sceptical about me staying longer. However she and others made an effort to get me more time, arguing my case with the insurance company. As I may have mentioned in an earlier post, the facility I was in was out of network, but covered for me because the Kaiser facility was full.

As I kept praying, my prayers became more flexible. “Lord, if you bring me home in 2 weeks, help me to be ready.” I knew I was making remarkeable progress, but in my heart of hearts I wanted to walk out of there. It seemed like if I had even 3 weeks it would happen. When I realized I was going to have to go home in a wheelchair, have a commode in my room, and give myself shots in the stomach for my blood thinner, I was broken hearted. I cried and lamented that I was NOT where I wanted to be in my progress. I didn't want the kids to see me like that. And I was scared. Every time I felt down, God was there. His presence was unmistakeable. Whenever I prayed, he soon filled me with his comfort and joy. (See earlier posts)

Even as this was going on, Christmas trees and decorations were going up in the visitor/gathering room. My focus was on therapy, healing, and prayer. It didn't feel like Christmas to me at all...until...I was surprised with my very own Christmas miracle! My doctor gave me the hope of going home on Christmas day! However, there were a few things that had to be done before I was released for an outing. I had to have a home home visit with my OT. Sam and I had to be cleared for wheelchair transfers and be able to navigate steps and doorways. And I believe we were watching how I was doing medically. It wasn't a done deal, but it was a good possibility! I cried tears of longing when I first heard the news! I just couldn't tell the boys until I was sure. I had a goal that first week!

And then this...!

My girlfriends from Tuesday night bible study came to see me! (There are even more that couldn't make it that night). They have been such a blessing! Their friendship, laughter and prayers! This picture was taken just before Christmas. I think it was the 23^rd. These ladies surprised me with so many gifts! A warm cozy blanket to snuggle with (so much nicer than hospital linens), a coloring book and pencils, snacks, and even a tiny christmas tree! I was SO surprised and touched. Having them there felt like the beginning of Christmas for me. Not only that, but they bought and wrapped all of the presents for my 2 boys. Sam didn't even have to think about shopping! Our boys were being loved and taken care of, and of course so were we!

That night we talked, laughed and prayed together. Of course we asked God to help me get home for Christmas day. These ladies brought/bring me so much joy! Then the next day, my dear friend brought me one final surprise. After visiting me, they had stayed up late to personalize a journal bible for me. They had picked out encouraging verses to write and illustrate along the margins. It made me cry. Can you tell I am quick with my tears? I always have been. Quick to smile and quick to cry. Often doing both at the same time! Like this day. And also....Christmas Day!!!

I made it! I found out Christmas Eve that I could go! When my oldest asked if I was going to be home for Christmas, I got to say “Yes!”. It was fantastic! It was exhausting! But I made it! God is good! And these boys got more presents that year than we would ever have purchased on my our own! Thanks ladies for caring for my kids so abundantly! Our family felt so loved by your generosity.