Fear of the Living Will

Crying. Just sitting crying. The first time it was because thinking about how fast my mom died in the end. Now, it’s because I’m thinking of my husband. No, he’s not on his way to dying but I may very well be.

It’s not that the cancer is in a bad state. It’s actually stable right now. But up until this point, I have refused to do a living will. The questions… the decisions you have to make and put on paper. Not everyone is able to face the hard task it is about your own death.

I don’t know what I should do if I wind up in a vegetable state, or be in a bed on a breathing machine for the rest of my life. When I think of these questions, my first thought is to preserve myself; I don’t want to die. But I don’t want to burden my husband either.

I would want him to be able to grieve properly so he can move on when the time is right. If I’m on a ventilator for a year, he would be hurting seeing me in that condition. So what do I do?

I’m gonna fill out the paperwork now. I’m not going to put it aside again. I can handle this, I can handle the hard questions.

I want to leave room for God in my decisions. I want Him to have all opportunity to save me in the end. You know, how I asked God to save my mom in the end. Well, the will of God will definitely trump any decisions I make.

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Mustard Seed Faith

I had a CT scan done last week, and got my results when I saw my oncologist on Wednesday. I was incredibly nervous to find out what was going on with the lesion in my left lung. Back when I was diagnosed last September, it measured approximately 6x6cm (about the size of an egg), and had only shrunk down to 4×4 cm after six rounds of standard chemotherapy.

By standard chemotherapy, I mean using one platinum-based IV drug called carboplatin combined with another kind of chemo called alimta once every three weeks. Carboplatin is very toxic so patients typically only do six rounds, but if you have advanced disease like myself, you may continue using the chemo drug alimta as maintenance therapy. Alimta takes only about 15-20 minutes to get in your system, and is not as harsh on your body.

I was concerned that my lesion wasn’t going to shrink anymore with just the maintenance therapy. All I could hope for was that it didn’t start growing because if that happened, I would move to my last line of defense and try immunotherapy. I technically had already tried one of these drugs (avastin prevents new blood vessels from forming) when I moved to maintenance therapy, but it caused me to be in more pain to the point I needed to start taking pain meds again so I stopped after only two rounds. Having five extra months to live (as the drug promised) was not worth the pain I was going through.

So here I was knowing that I had already said no to one drug that could help prevent any new growths, and I had to face the results of another scan. My husband was with me as he always is for dr visit/chemo days and I think he was a little nervous too. When my doctor came in the room, the first thing he addressed was the good report on the CT scan. No new growth! We were relieved, but as we were trying to find out how big the tumor was now, we were shocked to learn that it wasn’t there.

We didn’t understand what the doctor was saying, not sure we had heard him correctly. We were having him reiterate what he had just said while I was trying to study the report in my lap. He said “there is no measurable mass” in my left lung, the same thing staring back at me in black and white. It had only been six weeks since the last CT scan where the report clearly stated the tumor was 4×4 cm. Somehow, it went from being the size of a walnut to nothing in just two chemo cycles of maintenance therapy.

Now, I know that there is no way that a maintenance drug that only puts 15 minutes of chemo in my body for 2 rounds can make a tumor of that size just disappear when standard chemo with a much stronger drug couldn’t do that in 6 rounds. The math just doesn’t add up. Even the avastin can’t make tumors disappear like that. There was only one explanation. God did that.

I was in shock for quite a bit of that day, not because I didn’t believe God could do it, but because of the amount of favor He poured over me and my situation. Today, I found out that He has done the same thing for another person who had a 11 mm tumor in their left lung and theirs is completely gone now too!

God is definitely still in the business of doing miracles. Things can seem so bleak even when you have faith because you often still don’t know what God’s plan is for your life. We hold on to Him for dear life, praying and hoping that His plans for this life still include us a little bit longer, and it is just pure joy when we finally come to understand His plans for us.

I pray for anyone dealing with a long-term, debilitating illness. There are still plenty of reasons to hope, even if your faith is as small as a mustard seed.

He replied, ‘Because you have so little faith. Truly I tell you, if you have faith as small as a mustard seed, you can say to this mountain, ‘Move from here to there,’ and it will move. Nothing will be impossible for you.” Matthew 17:20

What’s The Point?

“What’s the point?”

Someone asked me this today. They wanted to know why, with all the time I have to myself during the day, I don’t do anything productive. Why don’t I tweet anything? Why don’t I practice my piano? Why, why, why? Oh and then “what’s the point?”

Are they trying to say what’s the point of me still living then? Is my life worth nothing unless I’m doing something productive?

They are not sitting in my shoes. They don’t have to deal with the sickness, pain, treatments, procedures, and setbacks that a person with cancer has to. I’ve been honest about my lack of direction, my bouts with depression, struggles with faith, and how I’m without a roadmap when it comes to what I’m supposed to do now. I’ve also been very vocal about the issues I’m having which keep me mostly chair-bound. But I guess I’m still supposed to accomplish so much while stuck in this chair during the day.

I was given a list of all these things that I could be doing instead of nothing. Sorry to the person that thought this conversation with me was going to be productive or even motivating because they obviously don’t understand how depression works, how setbacks discourage, and how I still don’t know what my purpose is to be now that I have cancer. I have good days and I have bad days. I don’t know which it’s going to be when I wake up everyday. I’m just thankful to be alive.

I will say this though. My mom was going through her cancer battle while I worked at the American Cancer Society. I couldn’t understand why she didn’t advocate for a cure, why she wasn’t talking about it to others like some of the survivors I knew in fundraising. In fact, her best friend didn’t even know she had it. I thought for sure she would be a fighter as far as finding a cure but she wasn’t. She didn’t do much of anything day in and day out. Pretty much do her treatments, surf the internet, spend time with family, and sleep. Now that I’m the one with cancer, I’m really not that far off in doing what she was doing.

What is so wrong with resting and taking care of myself during the day? Why do I have to have some grand masterpiece that shows I’ve been productive for the day? And what constitutes being productive? Who gets to decide what I, a cancer patient undergoing treatment, should do with my time all day? Cause really, what’s the point? I could spend my last 6 months watching tv or putting all my energy into taking a class, but one of these things will relax me while the other will likely cause unnecessary stress.

I think it’s really simple. When God calls on me to do something more, than I’ll do more but for now, let me have my rest.

 

It’s Not About Me

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I have spent a lot of time these last few months spinning my wheels, doing nothing. The tv is a nice mindless activity to get me through the bulk of my day without requiring a lot of energy out of me. This works because getting around has largely been hard for me to do as my back and hips continue to heal from the cancer. I sit in the nice chair my in-laws brought over for me with two main things in my lap – my dog and the remote. The problem is that it really doesn’t require anything out of me except a commitment to only the tv and nothing else. Ever notice how easily we go from one episode to the next while watching something on Netflix and before we realize it, several hours have passed and we have nothing to show for ourselves? They want this to happen or they never would have created the auto play option. And honestly, the last time I ever spent this much time binge watching tv was before I met my husband, before I got saved. I’ve had more important things to do. So why do I sit here now and consume so much that does so little for me?

The answer is really very simple. Call it avoidance of the big and little feelings that I have to still deal with lurking on the back burner of my mind. Or laziness to dive into something that will require a bigger commitment than I feel I can commit to. Maybe a bit of both even. There was a time when I longed to spend my days reading the bible all day instead of working. Now that I am home all day, this couldn’t be further from the reality of my current situation. Before an hour ago, I hadn’t opened my bible in weeks. Sure, I’ve listened to a few sermons but it’s not the same. Before today, I haven’t listened to worship music in weeks. Why? Because being well takes me forward a few steps and being unwell takes me back a few. There have been moments on this journey where I have really seen God’s hand, and then the rest of the time it seems like just deafening silence. And having to deal with things you don’t really want to deal with is sometimes enough of a reason to pull away from someone like Jesus, even when in my heart I know that He is the answer, the solution to everything I am dealing with. I’m not proud saying this but even I am not a person with perfect faith and perfect obedience to Him.

Why am I telling you this? Because the struggle is real. Every day is a battle to get back to Him, to get back to His word. The devil doesn’t want me to rely on Him for strength. In fact, the farther he can get me from the word of God, the more he can try and fill my head with nonsense. I know the truth but it’s still easy to take me away from God when I give in to the bleakness of my situation, when I let go of Him and hold on to the sickness my body is battling. I don’t want to live my life spinning wheels and just taking up space. Yes, there are still a lot of things I can’t do but there is plenty I can still do for the kingdom. Sometimes, it just takes me to wake up from my slumber and remember this isn’t about me. This whole cancer journey is not about whether I live or die, but about whether others live or die knowing Jesus. It’s time I remember my part.

 

 

The Need For Rest Will Just Have To Do For Now

The last time I was sick on Christmas was five years ago… before my life was drastically altered after meeting my husband and embracing the Christian faith wholeheartedly for the first time. I had traveled to Colorado via Greyhound to spend the holiday with my best friend and her kids. Taking the bus was a great way to get out of the city to venture the beaten path with my camera after the end of a six-year relationship I never should have been in, and the end of a disillusionment for an affair that would never be more than a roll in the hay. 

Yeah, I’d had better days and the opportunity to run away from home was enchanting. The road to freedom was a little more traveled than I wanted it to be though; it took three days to get to Colorado and five to get home. I remember getting stuck in the Dallas bus station for a day and a half while a snowstorm wrecked havoc just north of us. I was still trying to get to Colorado, and I was completely at the mercy of a storm I couldn’t even see. It wasn’t snowing in Dallas where I was, but all around me it was coming down so heavy that travel all the way up to Denver was at a halt. I just wanted to get where I was going, and I wanted answers. There was no way out and nowhere to feel safe. 

I think it took a good 12 hours before they finally brought a bus out for us weary-eyed travelers to sleep on. I was so thankful… all I wanted was answers and rest, but I would settle at the moment for just some rest. It’s how I’m feeling again after all these years.

Cancer has a way of eating away at your soul… if you’ll let it. Sometimes I do, I won’t lie. Sometimes, I give in and let the cancer take a bite or two out of me. Sometimes it takes a few days, weeks, or months for me to wake up out of the chokehold-slumber that cancer is and stumble again onto my faith. On Christmas Day, it was just a reminder staring back at me that reads “I can do all things through Christ who strengthens me.” Yesterday, it was a complete meltdown on the living room sofa where I begged God to help me over and over again. Today, it might look like something completely different but I’m not giving up. 

The answers may come another day but for today, I’m going to take the rest that comes with knowing Him. 

Tiptoe


Even when you’re going through it,

You’re not going through it;

You’re tiptoeing around,

Careful not to step on

Your own thoughts, your own feelings. 

You don’t really want to talk about it;

You don’t really want to write about it.

You only want to think about, write about 

Nothing at all.

The nothingness that stares you in the face,

The nothingness that will never be nothing again,

The life that will never be the same.

Crying At His Feet

I know that You can cure me but I don’t know if you will, and that scares me to death. Lord, help me.

I’ve suffered the last three months with what every doctor and radiologist thought was pneumonia. I thought the constant pain in my back and hips were from coughing so much. I thought my difficulty breathing, talking, and singing were from the pneumonia. Sadly, we have learned that is not the case. I have lung cancer.

I won’t lie. It’s hard be positive, to be faithful when your mom died of the same disease just three and a half years ago. Just as in her case, mine has metastized to other areas so that makes it stage 4. I used to work with cancer patients at The American Cancer Society. I know the statistics. I also know we have a God that plays by His own rules. 

I have people around the world praying for a complete healing. For me, that is a hard prayer. Not because I don’t believe it can be done but because so often I have seen Him decide on a different plan. I hope He wants to keep me here so I can be a light onto His people. Only He can make that decision but I have loudly made it known to Him that I want to be healed. 

My life changed instantly the moment I found out, and so did the lives of my family. I’ll likely be discharged from the hospital tomorrow with oxygen and a walker to embark on an unknown and scary path. I will no longer be able to work, and will be filing for disability. I know that God is with me, and I know that He won’t leave me alone to deal as my family and I sort out what this means for our lives now. It’s just going to take some time. 

Your prayers give me strength and hope after I get up from my meltdowns. I need my Christian brothers and sisters to keep lifting us up. Please understand that I’m not able to respond to everyone’s messages but I will read them when I can, when I have the strength, and when I need it the most. 

I love the ministry we have created. I don’t know the end game, what God’s plan is but I will continue to share how God is working in my life, the lessons He is teaching me, and so forth as I am able to. I appreciate every one of you for joining me on this path. I may or may not ever sing again, but remember that salvation is not found in a song. It’s found in Jesus. Don’t waste time on the world when you can run to Him and bow at His feet, relinquishing everything you’ve got. That’s what I’m doing. Crying at His feet. 

Putting The Thorn Before The Flower

As I sit here, I lay in a hospital bed. Alone. It’s 9pm on a Tuesday night, and my husband has to wake up early to get the kids to school. 

There are a myriad of emotions I’m experiencing right now. Lonely. Helpless. Emotionally drained and overwhelmed at the same time. I’m still in shock about how I have gotten to this point. If you read my last post, you will remember I was fearless then. That was before I met with the pulmonologist. 

I haven’t gotten any better. This is the stress I have been dealing with, the pain that has caused me to cry so much in the last week. But in the end, the consistent inability to breathe is what landed me in the emergency room. For months I’ve been wondering at what point someone would hospitalize me. After not being able to catch my breath for an hour and a half on Sunday, I made the decision myself. I asked my mother in law to drop me off at the hospital instead of church. I was admitted almost immediately. 

They have done extensive blood work and a bronchoscopy. I’m hoping to have the results tomorrow but so far I know there are no tumors and no blockages. That’s a good sign. I’ve been on fluids and two IV antibiotics since I got here, and everyone is taking my case very seriously. There is comfort in that. 

I’m a little less fearful and a lot more hopeful now thankfully. My husband came back from Miami yesterday where he had been helping with the hurricane relief. He surprised me outside my room when I got out of recovery from the bronchoscopy. I was so happy to see him, I cried out. Well, my hip was still hurting because the morphine hadn’t kicked in yet so that could have been part of it. 

He stayed with me quite awhile last night which I was thankful for, and then he switched off with my mother in law who stayed with me all night. I cannot explain the gratitude and comfort that comes from knowing someone is right next to you during an unexpected hospital stay, when you feel at your absolute worst. She had to go drive back home to SC today but my last words to her as she left this morning were “I’ll never forget.”

So where does this leave me now? Back to where I was when all of this started. When I first got sick, during every coughing spell, at each moment I threw up, at every moment I cried out in pain… there was only one left standing. Jesus. 

This is not to say that He is my last resort. When my family is here, of course I will make time to spend with my family. But I need my time with Him too. I was reading the Bible earlier and a food attendant came in whose name actually comes from the Bible. Elon. It means strong, like an oak tree. 

I had a great conversation with the the attendant, and I have a gift for her when I see her again tomorrow. I’m having encounters here at the hospital I would otherwise never have. Maybe this is about more than just me being sick. I believe God can use me anywhere, and I believe that He will. 

But right now… I’m going to turn my attention back to Him. I’m going to thank Him for the umpteenth time since I’ve been here, and delight in the grace He has bestowed upon me. 

I have learned to live with the thorn, and although it hurts, it has brought me closer to God than any flower ever could. Think about that for a minute. Would you trade in your flower for a thorn to get closer to God? 

Most will never do so willingly but He gives us all opportunities to know Him more intimately. I never asked to be so sick but I am grateful for the truths I could only know by allowing Him to walk with me on this journey. Only by succumbing to weakness could God’s strength and glory rise up in me when I had absolutely nothing left. 

I know I’m not really alone. I know He’s with me. He’s been with me all along. 

“Because of the surpassing greatness of the revelations, for this reason, to keep me from exalting myself, there was given me a thorn in the flesh, a messenger of Satan to torment me– to keep me from exalting myself! Concerning this I implored the Lord three times that it might leave me. And He has said to me, “My grace is sufficient for you, for power is perfected in weakness.” Most gladly, therefore, I will rather boast about my weaknesses, so that the power of Christ may dwell in me.” 2 Corinthians 7-9 

Fearless In The Midst of The Storm

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It seems like this year has been storm after another for me, and the one thing that always remains is pain. And sickness. And more pain. And more sickness. It’s enough to tire a person out.

I have talked about my struggles with chronic pain this year but then I fell silent. I’ve been quiet for quite some time for a very good reason. I was diagnosed with pneumonia in June, and still getting over it.

Coughing for three straight months will challenge anyone. Coughing to the point of vomiting and breathlessness is another thing entirely. I really thought I had whooping cough. I just couldn’t see how I could still have pneumonia after antibiotics and 2 rounds of prednisone.

I should say that I was quite surprised to learn I was so sick in the first place. I was weaning off all of my medications, something I knew God would call me to do at some point but six months into my chronic headache seemed to soon. Still, I went with it and put all of my trust in Him to get me through the pain. As my headache got worse and I started coughing non-stop, I knew something was terribly wrong. This couldn’t possibly be from weaning off of Lyrica and everything else that never helped anyway.

A month later when I was still very sick, I was told that I had bronchitis as well. Two weeks later as I struggled to take a painful deep breath, I was told I also had pleurisy. My painful ribs that had me struggling to walk were nothing more than the result of that and coughing so much. And as my breathing went from bad to worse, I had another chest x-ray done stat, only to find out the pneumonia was persistent after two months. Time for another round of antibiotics and a nebulizer for breathing treatments at home.

I finally have my appointment with a pulmonologist tomorrow, and I cannot wait. I doubt he will have special powers to make me better, but I do hope to find a regimen that will finally help me breathe easier because I’m not convinced the breathing treatments have helped me. Sometimes I think they actually make things worse.

I do the best I can dealing with all of this. I have a family to take care of, a job to hold down, and I have no more sick time left. All of my vacation time has been used up because of all of these things going on. Still, in the midst of everything that I have been through in the last 3 months, I have never felt closer to God. Never felt like He was there for me more than He is right now. It’s hard to explain but I’ve had to learn how to come to Him differently. I haven’t been able to sing in three months. I haven’t been able to work on music. There are days when I am so sick that all I can manage to do is cry out His name. He answers me every time.

Lately, in addition to helping me through this sickness, He is also giving me strength as I learn new ways to do simple things like breathing, talking, dressing myself, getting the dogs in and out of their cages, and doing a load of laundry. Did I mention that I can’t bend over? Yeah, haven’t been able to for at least a month and a half… basically after the pleurisy stopped being so bad, everything else started hurting. Coughing for so long is really bad for your back and hips so these days I use a crutch for walking and for bracing myself when trying to stand up. It has not been a fun ride but at the same time, my faith has grown stronger. I’ve surprised myself with a resilience that could only come from God as I continue to endure more and more pain. I was ready to call 911 the other night because I couldn’t get out of my bed after several hours, but instead I wound up talking to a friend of mine about God’s goodness. I went from crisis mode to a great level of peace so fast I didn’t even see it coming. Just talking about Jesus and sharing my experiences about how He has gotten me through tough times literally got me through the most excruciating pain I have endured in a very long time. Only Jesus can bring that kind of peace in the midst of pain that wasn’t going away any time soon.

Thankfully, I made it through the night and got a shot of toradol that helped some the next day. It’s amazing how thankful you are for level 8 pain after being at a 10 for so long. I’m  sure I will be just as thankful when I’m able to breathe normally again too. But regardless of how long that takes to improve, I know that God’s got His hand on my life, on my struggles, and on my perseverance to withstand these challenges. He is the difference between enduring pain and having peace in the midst of pain.

On another note, my family and I stayed home for Hurricane Irma, unlike Matthew when we evacuated to Alabama. Though we had damage like many families, what astounded me the most was my attitude change between the two storms. With Hurricane Matthew, I brought the storm with me in the form of anxiety, frustration, and emotional outbursts that wreaked havoc on my family. With Irma, I had a peace going into the storm that I’ve never had before. It didn’t make any sense, even while huddled in the bathroom with my family at 4 in the morning for a tornado in the area all the while knowing that a tornado warning is what sparked me to start having panic attacks years ago just from sheer fear. Instead of being swept up in the chaos of the storm this time, I remained rooted in the knowledge that it didn’t matter what happened; we were going to be okay. I have never felt such freedom and peace in my life, and I know it has to do with how much He has challenged me this year… to be fearless in the midst of the storm.

He’s challenging me and my family with new circumstances now. Nothing that I can discuss right now but an opportunity for the devil to try and stretch our faith even further. I hope he’s starting to figure out that we don’t give up that easily, that God is on our side, and that He WILL continue to fight for us. How sweet it is!

Lord Jesus, you are my rock and my salvation. You are the very breath that runs through my body and a beacon of hope on a cloudy day. I love you with all of my heart, and thank you for all that you continue to do for me, for all the ways you have shown up in my life, and for all that is yet to come. I pray that my story and my struggles can be used to show your love for your people, and to bring hope to the hopeless. May you be glorified every step of the way. In Jesus name, Amen.