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;)

Hope and Surrender in Prayer

In the last post, I talked a little about having a hope in a person and not an outcome. When I pray for healing, I am praying for an outcome! I pray boldly for a complete healing, not based on me and whether or not I deserve it, but based on God and his mercy and grace. I pray and hope for my cancer to be one of those astounding statistics of cure...or at the least a deep remission. I don't know what will happen though! or where God's will and providence will take me. It might be his will that I would join him in heaven sooner than I ever imagined. I can't ignore that possibility.

I find myself needing to pray in full hope and belief that God CAN; while surrendering to what God would WILL. Sometimes it is a strange balancing act, but I have found three examples in the bible of this kind of prayer that gives me a model of prayer that I have found encouraging.

The first passage I found was Ezekiel being taken by God in a vision to the Valley of Dry Bones. It probably first appealed to me because of the bones in it! It's taken from Ezekiel 37:1-3.

The hand of the Lord was upon me, and he brought me out in the Spirit of the Lord and set me down in the middle of the valley; it was full of bones. And he led me around among them, and behold, there were very many on the surface of the valley, and behold, they were very dry. And he said to me, “Son of man, can these bones live?” And I answered, “O Lord God, you know.”

When I pray for healing, isn't that what I'm asking God? “Can these bones full of cancer live?” And here God asks Ezekiel that question to see what he thinks. He answers: “O Lord God, you know.” It's where the title for this blog comes from because I think it is a great answer to God's question. 

Ezekiel is implicitly acknowledging the God CAN, but it is his choice. Only God knows what he will do with his power and sovereignty. “You can make it be what you will. It is in your hands....your plan....you know.” God raises up the bones, puts on sinews, muscels, skin and finally he breaths on them giving them life. A picture of restoration. God can do amazing works of restoration in the physical body, but also in the heart (which if you read this passage in context this vision is a picture of salvation culminating in the Spirit of God being placed in his people and a promise to do it)! He reveals his plan to Ezekiel and it is a joyous: These bones will live!

The second passage is from the book of Daniel. Powerful, mentally unstable, King Nebuchadnezzar demands that Shadrach, Meshach, and Abednego worhsip his idol or be thrown in the furnace. Their response shows an awesome faithfulness to God. (Daniel 3:16-18)

Shadrach, Meshach, and Abednego answered and said to the king, “O Nebuchadnezzar, we have no need to answer you in this matter. If this be so, our God whom we serve is able to deliver us from the burning fiery furnace, and he will deliver us out of your hand, O king. But if not, be it known to you, O king, that we will not serve your gods or worship the golden image that you have set up.”

I love their reply. God is able, but if he doesn't save us it doesn't change our faith. We are prepared for either outcome. They do go to the furnace, but the Lord saves them so completely that not even their clothes smell like smoke. Again, God saves! He is able! They surrendered to his will, and his will was life!

In each of these two cases, God saves his people and restores. However, God does not always answer the way we want him to in our fragile earthly bodies. Sometimes there is suffering that ends in death. Jesus himself experienced this. He knows my suffering and is our perfect model in all things.

And he withdrew from them about a stone's throw, and knelt down and prayed, saying, “Father, if you are willing, remove this cup from me. Nevertheless, not my will, but yours, be done.” And there appeared to him an angel from heaven, strengthening him. And being in an agony he prayed more earnestly; and his sweat became like great drops of blood falling down to the ground.

The suffering that Jesus was about to endure caused him to sweat blood. He asked for a way out and God said “no”. Jesus surrenders his will completely and though he has the power to resist, he sacrifices himself for us. His sacrifice would bring salvation to many. Yes he endured the cross, but he also experienced the glory of his resurrection (the first of many). He rose and sat at the right hand of God. His suffering was for a good purpose and ended in glory.

If God answers my prayers with a “no”, I believe that even that can be used for good and will end in glory. We all will suffer. Jesus straight up tells us we will. The bible never shrinks from that truth. But our worse circumstances can be used for good. God has a good plan. So I will pray for healing, believe me I want it! I believe God CAN and he ia ABLE. I'm also surrendered to his plan and wait. “Oh Lord, You know...”

Hope

Following the hospital stay, I was discharged to rehab. Kaiser has an excellent, intensive therapy rehab center that is about 90 minutes away from where we live. When I heard about it, I was pretty excited to get started with a team of physical and occupational therapists and doctors. It sounded intense and intense is just what I needed. We kept waiting for a bed to open up...but nothing. Finally, I got the good news! It was worth waiting for....Kaiser was moving me to an equivalent out of network facility 10 MINUTES from my house!!! This meant my family could visit easier. My kids could come and visit. And friends!!! Oh thank you, my sweet friends.

I arrived on a Sunday. It is the only day off in the therapy schedule. It is also the only hair washing day for patients that need their hair washed in their bed, which because of surgery; I did! I can't think of anything better! It had been 10 days! It was also the first time in 10 days that I was dressed in my own clothes! not hospital gowns. I was smiling ear to ear!

What I didn't know at the time was that my doctor had given me a 50/50 chance to walk again after the spine compression that had left me paralyzed. In the hospital I was working on sitting up with assistance in bed instead of lying down. At first it caused me to feel dizzy just to be in an upright position after so long. I think we attempted to stand before I left the hospital. I was not quite, but almost there! My first week in rehab went great! The progress I made was miraculous....continues to be miraculous! I always held onto the thought that I WOULD walk again. I just couldn't see it any other way. Until, finally, I learned the prognosis my doctor had given me. 50/50 chance....

At this point I was in a wheelchair and getting along well. I had been standing in a standing frame to strengthen my legs. My energy was high. I knew God was with me. He had been present in his joy for the last 21 days or so. However, when I got this news, hope flew out of me and I was immediately flung into despair. The possibility of being in a wheelchair the rest of my life loomed before me and I was scared! In that moment I cried out to God in prayer. “LORD! I WILL NOT LET THIS DEFEAT ME! I WILL NOT GIVE INTO THIS!”. And by “this” I meant despair. I knew that if I gave it even a little room in my life it was going to pull me down and drown me. I'm not talking about fear or sadness, which continue to be a part of my emotional process and I count as healthy. I am talking about DESPAIR. The despair that my fate is laid out...it is the worst outcome...and I am hopeless. It is the hopelessness that I could not let in. Not then, and not later when I was given a bleak prognosis with my cancer.

The hope that I have is not in an outcome. It isn't just a hope that things will “work out” for me. I am hoping in a person...in Jesus. My hope is not just for living on earth, but for an eternal place with Christ...a place without sickness or death, where God himself will wipe away every tear.

I do not know what will happen to me on earth between now and then. I don't know the outcome of my disease. Or how it will effect my family and loved ones. (That part is the hardest for me). I do know my God. I know that he will be with all of us who call on him and seek him out. My hope is in Him.

What Helps Me...

When I woke up after surgery, my first thought was “I'm alive!”

I soon discovered that I had a total loss of feeling and movement from my hips to my toes. Somehow, in that moment, it didn't matter. I was alive!

Since my emergency room admittal, I had the tumor removed, my spine decompressed, some of my spine cemented, and rods put in for stability. I had 10 days in post-opt. Pillows were tucked in all around me to prevent me from rolling on my back. Since I couldn't move by myself, the nurses had to roll me over every 2 hours to prevent bed sores, but also intense nerve pain that would build up. It is too long to explain how they roll you over, but it is a PROCESS to move an immobile person with back injury! And then they tucked all of my pillows around me. I was known on the floor as the “Princess and the Pea”. I have to say, I hated that name.

In all of it, from the beginning, God carried me through in an amazing way. He gave me a peace beyond understanding and even a joy that surprised me. I don't know where it came from. It wasn't me. It was the presence of the Lord with me, giving me strength. While I know he supported me with his Spirit, I also believe I held onto some theological beliefs that helped me keep, and even grow, my faith. These are what I want to share, if it is at all helpful.

From the beginning, Sam and I held onto the belief that God is in control and God is good. It was my bedrock thought that kept me from feeling out of control - when clearly I was! God is in control because he is all-powerful, all-knowing, Sovereign Lord with all-authority in Heaven and on Earth. God is good because he is love, merciful, a Father, and provider. He is compassionate and cares for me. Sometimes when there is suffering or pain it is hard to reconcile these two truths. There are people who have written more on this than I have ever thought about. I guess the next two thoughts are how I process through that struggle of God being good, but bad stuff happening. That, and I stay far away from  the question "Why?" or "Why me?" It doesn't help. It can't be answered. And it focuses on me. It's basically a mind trip to nowhere.  

The second belief that we held onto was that Christ is with us in suffering. It wasn't promised that we would never suffer. In fact, the bible says pretty clearly that we will. What we can be sure of though, is that he walks through it with us and we are not alone. More than that though, our suffering itself has purpose. God promises to use even the worse times for good. The suffering we experience is used to shape our character. It is used to comfort others in their distress. Ultimately we know that suffering, pain, trials are temporary. With Christ in us, we will join him in heaven where there is no more suffering. It is one of the things that will make heaven - Heaven.

Finally, God is sovereign. So here's the thing: God is able to cure me in an instant. And I pray that he does! He has the power to do it! And I believe in miracles. But....he can do what he wants. Even if that means my prayers don't get answered the way I want. Even if that means my cancer doesn't get cured. He is in charge, the Sovereign King, the Lord over all...who has a plan. My task is to surrender to his plan. It goes back to my first post. Surrender is possible, because of who we are surrendering to. God is good. He is merciful and full of compassion. I believe he grieves over my pain. But His perspective is eternal - he knows all and sees all at all time.

So...what helps me....

God is in control and good.

Christ is with me.

God is sovereign.

Surrender

In Dec 2015 my chronic back pain had escalated to the point that I had collapsed on the floor and couldn't get up. That's when we called 911 and I was taken to the ER. I had an MRI and a rather large tumor was found on my spine at T9-T11. As I was waiting for surgery, my spine had a compression collapsing on the nerves. What I experienced was sudden pain, despite the pain killers I was on, but more disturbing was a hot liquid feeling that oozed down my spine to my legs leaving a path of numbness and loss of feeling. Needless to say I was scared! But then for a moment it began to go upward. In my pain and confusion I thought “it's going to go up to my heart and I'm going to die”. In that moment, all I could do was surrender. My husband. My children. To God. I was leaving and I would not be able to look after them anymore.

Although, I did not die, and was probably not at risk for death in that moment:), it was the starting point of this journey for me. Surrender. Over and over again I come to the place of not being in control or able. Of not knowing the outcome. Of needing to make decisions for my kids I was not ready to make. And so I need to surrender everything. My kids. My husband. My future. My healing or my lack of healing.

 The key for me is who I am surrendering it all too - my God, my Lord Jesus, Yahweh, the Almighty, my Counselor, my Healer and so much more. He was with me in my scariest moments in the hospital and the rehab that followed. And when I say “with me” I mean “WITH ME”. In the ER, in the hospital and rehab. His presence was there giving me hope, peace and strength in one of the most tangible ways I have known. Coming through that, I can truly know that whatever happens, when I need him most he is trustworthy and true. He is good. And he is faithful. And most of all he loves me and will not forsake me. In short – he is worth surrendering my all too.