When I got diagnosed with cancer a year ago today, I didn’t think I would see the day when I had hope again. I didn’t think I would see the day when I believed I’d be okay again. I had spent so much time suffering up until the point I was diagnosed, and knew that having cancer meant suffering even more. But more than anything, it meant that I may be losing my life too. Losing everyone that I loved and everything that I had worked for. I can’t believe that I’m still here.
As much as I feared the end, I also knew that my life would never be the same. I was not prepared for the normal activities of life that I would no longer be able to do… like cooking, cleaning, taking a walk, or buying groceries. I was not prepared for the humility I would need in allowing others to care for me instead of me taking care of them.
I haven’t been able to serve others the way that I used to. I’ve spent my days just surviving, and trying to deal with everyday setbacks with my health because of treatment side effects. It’s taken a long time to get to a point where I can be a little more self-sufficient, like walking to the fridge on my own to get a drink without feeling like I’m going to pass out. And when I say a long time, I mean like I have only been able to do that in the last three weeks. My prayer is that I will get to a point where I’m able to start doing more for others, and give back to the heroes that have been there for me through this journey. In the meantime, I’m going to try to focus more on accepting the fact that I am a survivor instead of just merely surviving. I know that God will continue to lead the way.
“Blessed is the one who perseveres under trial because, having stood the test, that person will receive the crown of life that the Lord has promised to those who love him.” James 1:12
An old coworker of mine lost her son last night to cancer. Bone cancer. He was 14 years old.
He won’t live to finish high school. He won’t live to fall in love and marry his sweetheart. He won’t bring kids into this world or work hard to provide for his family. There will be no growing old with his wife and hugging his grandchildren. His life is no more.
I don’t know how God makes these decisions. How a child can die but I’m still here. I’ve been able to do so much with my life that Kristian will no longer even be able to dream of doing. My prayers go out to his family.
Lord, make my life meaningful. Help me make my life mean more than the hours that seem to just pass by. If I’m still here, than it must be for a purpose I can only hope to understand. There must be more God is calling on me to do. Help me succeed so that this life is not held in vain. Amen.
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.
Lately I have been asked even more, “how is your wife doing?” Overall the fact that she is still here with us has been the biggest blessing ever. I thank God daily for each day and even each moment that I get to spend with her.
We used to love going on long walks together. We would talk about the future, share stories of our past, and even share thoughts about growing our family. So much has changed in such a short time.
Yesterday I had to explain to a coworker that my wife has a hard time just letting the dogs outside. God has done an amazing thing by healing Kristeen enough to get her off of the oxygen, but the battle she still faces today is her heart rate jumps up to 140 bpm anytime she gets up to walk or even standing to brush her teeth.
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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?”
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.
I cough a lot. I cough to the point of throwing up the last thing I ate or drank. This is especially the case after I walk across the room. That’s right – barely walking can send me into a coughing fit that will make me lose my lunch. Maybe it’s because of the fluid in my left lung. Scans have shown a moderate to large amount of fluid for months. We thought that draining it would help improve my condition. Not only did the fluid quickly come back, the last PET scan showed absolutely no change in the amount of fluid even though it had already been drained. I went through the horrendous pain for nothing and don’t feel like it even helped me.
Then there’s my heart. Walking across the room really sends my heart racing and leaves me out of breath. Even just standing can cause the same reaction, and then I’m really left coughing and throwing up. I’m sure it’s my low hemoglobin counts again. Every round of chemo wreaks havoc on my bone marrow, making it impossible to have a normal amount of red blood cells. They’re not low enough for a transfusion but it sure keeps me from moving around too much. That means more days using my wheelchair instead of my walker when I get out of the house. It’s safer this way so my heart doesn’t run to 140 bpm with every little task but using a wheelchair makes me feel like I’m regressing instead of getting better.
These are just some of the things I deal with day in and day out. In some ways, I am doing pretty good despite all that I am going through but there are still some rough moments. There are still fears and doubts. It’s really scary not knowing if you’re going to die or not. Doing treatment after treatment, not knowing if it will be enough. My mom died just 4 months after being deemed cancer free. It had gone to her brain late in the game… and she quickly succumbed. We were told she had maybe a year when she went into hospice; she was gone within a day.
In my case, I’ve watched God allow the treatments to make improvements to my condition. I’ve celebrated small successes like favorable PET scans and shrinking lesions, all while knowing the battle is long from over. I really want to hear the words, “cancer free,” but I’m not naive enough to believe that it means the battle is won. Several of the cancer survivor volunteers I got close to at the American Cancer Society died within a few years of meeting them. Their cancers came back with a vengeance and no amount of treatment would help. Being a cancer survivor is a badge of honor, but it’s terribly heartbreaking when a survivor is a survivor no more.
So how do I handle my fears as I continue the fight? I wish I could say that I spend my days at the feet of Jesus; honestly, I still find myself spacing out and not really dealing. I’m still trying to find my purpose through all of this, how best to spend my days at home now that I can’t work. I don’t really know how long it will take for me to get on the boat instead of just treading water. I wish I could say it is an easy path to get there but in reality, there is still quite a bit of fog keeping me in my present state. The only thing I have going for me is the fact that I haven’t given up on getting out of this situation.
I still believe God can rescue me. I still believe that God heals and does miracles. I don’t know if that is His plan for me but I trust Him to take care of me as I go through this trial. Why do I say that? Because I may be treading water but I don’t feel like I’m in danger of drowning. I may be treading water but I know Jesus is there, close by, even if I can’t see Him. And there are the blessings that keep coming out of this situation that remind me that it’s not all gloom and doom.
One day, God will call me home and I’m sure it will be a glorious moment for me. In the meantime though, I pray that He uses my time on earth for something truly wonderful, something that truly brings joy to His kingdom. I pray that I find my purpose through all of this, and that I can continue to push forward despite my fears. Having cancer is no easy feat but it can be just what is needed to bring glory to Him.
“But those who hope in the Lord will renew their strength. They will soar on wings like eagles; they will run and not grow weary, they will walk and not be faint.” Isaiah 40:31
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.