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.

Rehab: Part 2

Ok, trying to recall a typical day in rehab recap: sleepless night, rush to eat, dress, wash up, brush teeth, and dress, maybe meet with doctors and then OT meets me in my bed at 8am. OT work with dressing, getting into wheelchair using slide-board technique, getting in the car, and eventually getting home and into the house!

It's all a blur now, but I think I had a period of time after that which was filled with a variety of appointments. Sometimes my doctors, a social worker, therapist, and calls from Kaiser. I also had to squeeze in lunch, medicines, bathroom schedule (because I was not yet going on my own and they didn't want my bladder to explode like a popped balloon;). And sometimes I would just grab a nap if I could. I believe I was scheduled for group exercise in the gym, but I often missed it or only went some days because of all of the above. I felt frantic to make my appointments and felt horrible when I missed them, but I had to take care of these things and the schedule was SO tight. Finally, I came to the point where I accepted that a nap was as much a part of my recovery as exercise. Plus, I really wanted to feel good in my favorite class: Physical therapy. I had a GREAT therapist. Her name was Jennifer. I loved her! She was firm, but fun. And very encouraging. She would get excited with me. This is me my first time standing up in a standing frame.

At first, I could only stand for a few minutes. In time I could go longer. And then Jen started throwing balls at me to catch! She made it fun! We started with stretching. I loved it! I can't tell you how good it felt to move my body after weeks in bed and in a wheelchair!

When we were done, I had some free time for dinner. Then there was an evening class that everyone was invited to. It covered topics related to spinal cord injury. Alot of it was self-care: Checking your skin (because you don't have feeling skin can become damaged or cut without you knowing), bladder care, bowel programs (you don't want to know), spine injury levels and getting a better understanding of spinal cord injury. One thing many people don't know is that your central nervous system regulates your temperature and blood pressure. I remember how cold my feel felt when I got home and was going without my blood pressure binder.

There were one or two evenings that was based more on us sharing why we were there with the group and questions we might have. I loved those times. It was great to talk about what was going on with people who understood and to hear their stories. There were several of us with young families. We also had former patients come back and share their recovery stories.

I think by 8 or 9pm, I was pretty beat. It took a little to get ready for bed.

I should mention that most of the day I had my mom or Sam or my sister with me. I often had the kids brought by in the evening for dinner together. There were some days I was just too tired. But when they came, they did great! They played in the courtyard, we ate together, and just were happy to see each other.

I guess that covers what my days were like. Busy, exhausting, productive.

I knew I was in the best place for me.

I was shocked to learn I would only be there for 2 weeks!

Rehab: Part 1

A story day:)

Rehab was intense! I was there for two weeks. It felt like forever and not enough time. I could feel my body improving every day by leaps and bounds. The recovery seemed miraculous. In the picture I posted in my post “Hope”, I had just arrived and was almost completely paralyzed from my hips down. I could pull myself to sitting with help from the nurses. I could manveuver my legs off the bed with the help of the nurses. And that was about it. Since it was Sunday - no therapy had begun yet, just that glorious hair washing! I was admitted to rehab December 20th 2015.

I'll try to describe a typical day and some of the progress. I hope it doesn't come across as “poor me”, but I really want to convey how crazy this was, be real, and recall the remarkable change that has happened in such a short time. 

So first off, while I was there I was inflicted with insomnia. I had a hard time falling asleep, ok that's pretty common. Here;s the thing though...I also had nighttime medications I was woken up for AND needed to be turned in the bed every two hours at this point since I mostly couldn't move on my own AND I was wearing massive compression boots to prevent foot drop and blood clots in my legs AND I had roommates. So my sleep was VERY disrupted.

My morning started at 5am or 6am with my morning blood draw. I would then call my nurse to let her know I was up and she could help getting me ready for morning therapy. This involved bathrooming – I could not go on my own and would need to be catherized. Luckily I was self sufficient with the BMs. Too much info? Sorry, this is how it was. Modestly went out the window. When you have to poop in a commode with two curtains between you and your roommate – AND HER HUSBAND!!!! AWFUL!!! You have then reached the end of your dignity (except maybe sharing it on your blog).

Ok, enough of that! I would then get a sponge bath before being dressed. Eat breakfast, meet with my rehab doctors to get and give feedback on meds and treatment. They were fantastic and really listened to my concerns. I would then try to squeeze in breakfast before my Occupational Therapy session started at 8am. He came to my room and I was always running behind; I woke up at 6am people! With no commute!!!

In OT, we worked on dressing first. He instructed me from the other side of the curtain and Sam or my mom helped a little at first. I was given a grabber to reach my clothes and dressing stick for putting on shoes. The best part though was when I got to maneuver into a wheelchair. I say maneuver, because I had to learn how to use a slide board to get from the bed into my wheelchair using my upper body. You could not believe how good it felt to be in a wheelchair after being in bed for SO long. It was hard at first. Since I was still recovering from surgery my core muscels were shot, and my blood pressure was so low from reclining for so long. I had a binder I needed to wear anytime I was sitting up to keep my blood pressure up. This thing looked like a corset and it was pulled tight!...but man, did it make a difference. Without it I was feeling light headed. I wore that for quite a while, even after coming home.

Anyway, I can still remember how good it felt getting into that wheelchair. It was moments like this that brought so much joy! How can I explain that my worst time was also my best! I was so thankful for every improvement! Not being able to move is scary, obviously, but you are very dependent for your most basic needs. And being able to get out of bed...to see the hallways and other patients, to get places by myself..was thrilling! I couldn't help smiling!

Well, I can see this is going to be a longer post than I thought:) I'm only at 9am in my rehab day! So I'll wrap it up for now. It's hard to believe that I am where I am today – walking! Be it with a walker or canes, I am out of the wheelchair and moving towards more independence. It helps me to write and remember how far I have come. 

Lately it's been hard because my nerve pain has been getting worse with my chemo treatment. We are adjusting it to a lower dose, but it's too soon to see if it is making a difference. It's been hard emotionally to feel like I am going backward in my rehabilitation. Especially when I feel like most of my recovery for nerve regrowth is in the first year. The same exact time I am going through all of these crazy chemo treatments. I hope it doesn't effect my recovery too adversely and the nerves continue to heal regardless of the discomfort I am feeling. It's been one of those hard phases to work through. There have been several.

The thing is, those hard phases helps us(Sam and I) get to the next level of acceptance. I will not likely be driving on my own anytime soon. We need to get the car modified with hand controls at the wheel. I will likely need to do some kind of drivers ed class with an OT to learn to use them. I'm thinking, when am I going to have time for this!?! How are we going to pay for this!?! But you know what, God is revelaing to us some ways we can accomadate for these expenses. He ALWAYS provides. He truly is amazing!

So there is the part of life that will always be there no matter who we are - ups and downs! And we've experienced a lot of them! Hoping for the best and then having a realistic assessment for the here and now. Being realistic about my needs requires planning and acceptance for where I am today. 

Here's what's going on this week that made me write that: I have to renew my temporary handicap tag. I needed to decide if I was going to get another temporary 6 month tag or go for the permanent one. It sounds crazy, but it was a really tough decision to go for the "permanently disabled" tag. It's hard to acknowledge that I will likely need a handicap placard for some time. Maybe not forever, but probably longer than 6 months! And that phrase "permanently disabled" was like a stab in my heart. I had to get some doctor or nurse to sign off on this and it just made me sad. It was a downer. 

It could all be so much better....but it could be a WHOLE lot worse! Where I focus my thoughts is the difference between bitterness and joy. I'm not saying I don't feel sad and cry sometimes. It would be inhuman not too. But Lord, save me from ever being bitter! I want so much to focus on the "It could be a WHOLE lot worse!" and feel grateful for every bit of progress along the way.

PS This was a long post. I wasn't anticipating that (and I don't have an editor)! I'll try to keep it shorter next time;)