Health Update: A New Chapter Begins!

Health Updates

No news was good news

It’s been almost two years since I last said anything about my health. It’s been a very good two years cancer-wise! I’ve mostly felt like myself, and have had a lot of the benefits and blessings of cancer without many of the drawbacks. God has been growing me and giving me a greater appreciation for my life. I have come to see Him as more magnificent, more loving, more powerful, and more gracious than I thought before.

Every few months I went in to get an MRI to make sure the tumor wasn’t growing and I’d thank God for the life He’s given me. There was something healthy for my heart to have this regular reminder of my mortality. I felt like I had a new lease on life every time I drove away from another appointment with my oncologist with an “it’s not growing” report. The radiation did its job and I haven’t suffered many side effects. The tumor even shrank some from the radiation. I meant to write a post about that but never got around to it. God has been so gracious to me over the last couple years.

So now I’m writing because my most recent scan brought some unwelcome news. It appears my tumor is growing again. Last week I had my regular MRI but instead of “it looks good” my doctor was concerned by what she saw. A spot that looked like typical radiation after-effects had grown and changed, and it looks like tumor growth. Several other doctors and one other test affirmed my doctor’s suspicion. It looks like my tumor is growing again in a sensitive spot on my corpus callosum. That’s the part of your brain that joins the left and right hemispheres together.

Here’s what’s next

We spent some time looking into our options and the best one is for me to start chemotherapy again. I’m starting this upcoming Monday on two chemo meds that are different from the one I used before. They’re considered “well tolerated” so the hope is they won’t do much more than make me tired like the last one did.

The plan is to start with 3-4 cycles of chemo (each cycle being 6 weeks) depending on how it’s working and affecting me. We’ll get very frequent MRIs to see how things are going. That’s basically it. I’m going to keep working as much as I can.

Here’s what I know

This is a bit of a surprise, but not a shock. I expected at some point I’d get a scan like this. I hoped it would be later, I just actually started to believe it might be much later. Through this entire journey though, what is being solidified in my heart and mind is this: God is good. These are words I’ve said most of my life, but they carry such greater power and dimension than they used to.

I know this is already a bit long so I’ll wrap it up. I know I get long-winded. But I want to share a couple passages from Scripture that God used to encourage me in the days leading up to my scan. I didn’t know this was coming, but these are the truths God was cementing in my heart to prepare me for this next chapter:

Blessed is the man who remains steadfast under trial, for when he has stood the test he will receive the crown of life, which God has promised to those who love him.”

James 1:12 (ESV)

…yet you do not know what tomorrow will bring. What is your life? For you are a mist that appears for a little time and then vanishes. Instead you ought to say, ‘If the Lord wills, we will live and do this or do that.’

James 4:14 (ESV)

Blessed be the God and Father of our Lord Jesus Christ! According to his great mercy, he has caused us to be born again to a living hope through the resurrection of Jesus Christ from the dead, to an inheritance that is imperishable, undefiled, and unfading, kept in heaven for you, who by God’s power are being guarded through faith for a salvation ready to be revealed in the last time. In this you rejoice, though now for a little while, if necessary, you have been grieved by various trials, so that the tested genuineness of your faith – more precious than gold that perishes though it is tested by fire – may be found to result in praise and glory and honor at the revelation of Jesus Christ. Though you have not seen him, you believe in him and rejoice with joy that is inexpressible and filled with glory, obtaining the outcome of your faith, the salvation of your souls… Therefore, preparing your minds for action, and being sober-minded, set your hope fully on the grace that will be brought to you at the revelation of Jesus Christ.

1 Peter 1:3-9, 13 (ESV)

I believe these words to be true. My hope is fully set on Jesus. I have an imperishable, unfading inheritance waiting for me. It is only because of what Jesus did that I have anything good, or that I can face this next chapter with hope. I want to stay, I want to be healthy, I want to be here with and for my family. But my hope is not in my health, it is in my Savior.

The hardest part for me, right now, is trusting Jesus with my family. I want them to see Jesus the way I do…to see Him as more beautiful than I see Him. I don’t want them to walk through heartbreak and pain. But I know these things reveal God’s graciousness to us in new ways.

If you pray, please pray for the treatment to work with minimal side effects, for Janelle and the girls to find hope in Jesus, and for God to be glorified through my story.

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Health Update: No real news

Health Updates

Lately I’ve been asked about my treatment a number of times and realized I never provided another update after my radiation finished. I don’t want to be a broken record or assume everyone cares about every update, and there isn’t much news to report, but I figured I could post a short one for those interested or wondering.

I did radiation treatment every weekday from 10/31/16 to 12/8/16, with Thanksgiving Day off. The only real side effect I experienced was fatigue (along with some hair loss on my head). I got more and more tired as time went on but never got nauseous or anything like that. In January we did an MRI to see what the radiation accomplished. The verdict was that the tumor was stable. It did not really shrink, but it did not grow either.

From there the plan is to do MRIs every 3 months to monitor the tumor. Because of the radiation the MRIs may be harder to read or show different weird artifacts. That means even if an upcoming MRI shows something weird we’ll likely have to do some more scans/test to figure out if we’re looking at an actual change in the tumor or just something due to radiation. My next MRI is next week, April 12th. If anything changes I’ll probably post another update. If you hear nothing, that means nothing exciting occurred.

I’d say right now I feel more normal than I have since my surgery in November 2015. I’m the farthest away from treatment I’ve been, and have more energy than I’ve had. It will be hard to figure out when the cognitive side effects from the radiation show up. Maybe you’ll be able to tell before I do. But for now I am enjoying being able to take walks with Janelle, play more with my kids, have more energy for work, and be more normal. Thanks for your prayers and caring!

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Health Update: New Treatment

Health Updates, Miscellaneous

Do you know how when you see someone every day, you don’t notice changes very quickly? Then when someone else who hasn’t seem them in a while comes up and points out a change, you realize it was right there and you hadn’t seen it? Or maybe like me you see a picture of yourself and think “have I really gained that much weight? Something must be wrong with that camera!”

This is what has happened with my tumor. After June’s course of chemotherapy we went into a monitoring mode. It didn’t look like the tumor was changing, and there was no probably benefit from continuing with chemotherapy from that point. The plan was to watch the tumor with MRIs every eight or so weeks, and move to radiation if and when it showed growth.

September’s MRI showed a new spot, but it wasn’t the kind of growth you’d expect from a tumor. It wasn’t visibly connected to the existing tumor. Because of this, we moved my next MRI up to see how this new spot would behave and to take a closer look. On October 17th I had this next MRI. The new spot was still there, so my doctors all took a closer look at the MRIs from the entire year. They reviewed the January through October MRIs and four doctors came to the same conclusion: over the course of 2016, my tumor has clearly grown. They all agreed that now would be a smart time to move to radiation treatment.

So that’s what I’m doing. My first treatment will be October 31st, and from there it will be five days a week for about six weeks. The treatments themselves will be short and painless, about 30 minutes from the time I walk in to the time I walk out. It will feel like getting an x-ray. The short-term side effects I should expect are fatigue and hair loss, with some minor skin irritation too. The fatigue and weakness should go away within a few months of the treatment ending.

The risk with radiation for me has always really been in the long-term effects. Because of the size and location of my tumor, there will be some permanent side effects with my memory and thinking ability. Those will take some more time to manifest (starting two months after treatment ends, and popping up anytime after that), and their severity is impossible to predict. It’s really these permanent side effects that I am most concerned with when it comes to the radiation. So if you are praying for me, please pray for them to be limited, and for me to trust God through them.

God has been doing a lot in me these last months that I want to share. I want to have the discipline to post a few of the things that have been going on in me, so hopefully I’ll do that soon. But I wanted to share this news publicly first, so here it is without any real reflection. What I can say shorthand right now is that I know that now, as ever, God is in control. He is using this and will use it for good purpose. He is good and does what is good, all the time. That has not changed and never will, whatever my health.

Thank you all for being on this journey with me!

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Health Update – Taking a Break

Health Updates

I haven’t sent out an update on my health since May, and in the last month something changed, so I want to share an update with those of you interested.

In June I finished my eighth round of chemotherapy, and in July had my every-two-month MRI. The MRI showed what we expected – no change in the tumor. So at this point I’ve been on chemo since December, through eight rounds, and the tumor hasn’t grown or shrunk. With those results, there isn’t evidence that continuing chemo beyond eight months would produce beneficial results. We don’t know how much of the tumor is alive, or how much it would have grown without the chemo. It’s not considered a failure by the chemo, but we don’t know what we got from it exactly. (Though I’m learning you can never be too exact with this stuff. There’s so much variation, and so many variables.)

As I shared in my last update, the plan if this MRI showed the tumor being the same was to take a break from chemo and move to monitoring the tumor with every-two-month MRIs. After this most recent MRI we did take a serious look at radiation at the request of my doctor – she wanted to make sure we thought it through and got as much as information as possible before making a decision about what to do next. So I talked to a few more doctors, including a very well-known and respected neuro-oncologist, and we ended up with the same decision: take a break from treatment and monitor the tumor.

If and when it grows again (statistically speaking it will grow again, it’s just a question of when – months or years) we will start radiation treatment, or possibly something else if something else has been developed. We want to put off radiation because the size of my tumor and its location means that radiation will lead to some serious, permanent side effects. As of now there is only chemo and radiation, and chemo has taken its best shot for now.

It’s been almost two months without chemo and I feel noticeably better physically. I have a lot more energy than I did. I know I’m still recovering, but I feel better now than I have since before my surgery. I also don’t miss having to go in twice a month for blood tests. I know there is more fighting to be done, but I am happy for this reprieve right now.

I also want to say I am so grateful for the way so many of you continue to pray for me and my family. Many of you are more faithful in praying for my healing than I am. Thank you for the way you remind me that we are loved by others, and by God.

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Health Update – May 2016

Health Updates, Miscellaneous

It’s been a while since I’ve posted an update, and many people have asked how I’m doing. In general I haven’t posted any updates because nothing much has changed. But as someone told me, even that information is an update. So here is the latest about my cancer treatment and what’s coming next.

I have been on chemotherapy since December, taking it every month. Every two months I get an MRI to see how the tumor is doing. My last MRI was this past Monday, May 23rd. That MRI looked the same as the March and January ones. The tumor is stable, and not growing. We’d prefer to see it shrinking, but not growing is better than growing. An MRI can’t differentiate between living and dead tumor cells, so we don’t know how much of the tumor is dead, and there’s no way to know.

This week I am doing my seventh round of chemo, and I will do my eighth in June. My next MRI will come in July. If the tumor starts to grow, we will immediately start radiation. If the tumor is stable, I have a few options, but I’ll just share the most likely scenario.

The most likely scenario is that if the tumor is still stable in July, I will take a break from chemo and not start radiation. We’ll probably avoid radiation because of the size (big) and location (temporal lobe) of my tumor. The temporal lobe is involved in memory, language, emotion, processing audio/visual input…lots of important stuff. The amount of radiation required to treat my tumor will almost certainly damage my temporal lobe and result in significant impairment of some kind. So we want to avoid that.

If July’s MRI is clean we will probably move to monitoring the tumor with every-two-month MRIs. When it starts to grow again (which is certain, barring a miracle), we will resume some kind of treatment. That treatment will depend on how long the tumor was stable. It could start growing in a couple months, or it could take years (possibly as many as 10) for it to start growing again. It would be great if in the interim some new treatments become available, because as of now they are limited to chemo and radiation, and existing chemo has taken its best shot, while existing radiation will probably have the effects listed above.

That’s all there is to report. Thank you so much to the many of you who are so faithfully praying for me and caring for my family. This would be a completely different journey without the love of God being shown to us through you.

25 comments

Friday Five for February 5th, 2016

Check This Out, Miscellaneous

For this week, here’s some good stuff on marriage, singleness, God speaking, Advent, and some excellent videos on the Bible.

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Health Update – January 2016

Health Updates

For those interested, I wanted to share a quick update on my health since I haven’t done so since I started chemotherapy.

In general I’m feeling fine; my biggest complaint is being low-energy and feeling tired most of the time. I simply don’t have the physical, mental, or emotional energy I used to have and it’s noticeable to me. Part of this is that I’m still recovering from surgery, part of it is the chemotherapy.  The weeks I take chemo the fatigue is much worse than other weeks.

I’m mostly back at work, just without the energy or stamina I had before. It’s good, though, to be back at it and doing what I can.

There are all sorts of side effects I could experience from the chemo but basically I’m just fatigued, which I’ll take instead of many of the others. I am hoping and praying that my energy will continue to increase and I’ll start to get stronger.

The plan is for me to get an MRI every two months to check on the tumor. If the tumor is staying the same or shrinking, that is good news. If it’s growing, that is bad news and we will almost certainly add radiation to the treatment plan. Today I had my first MRI and the results showed that the tumor hasn’t changed much since the surgery. It’s a little difficult to tell because my brain was swollen and stuff was pushed around right after the surgery, so comparing the four-month MRI to this two-month MRI will provide us with clearer results. But according to the radiologist and my oncologist, it looks like for the most part the tumor has stayed the same since the surgery.

I will continue on the chemotherapy and in two more months we’ll get another MRI; if in that the tumor is still the same or has shrunk, we’ll continue the chemo another two months. If it’s growing then we will look at other treatment options, most likely radiation first.

For those of you praying for me – thank you so much. Please keep them up! And thank you for the love.

18 comments

Friday Five – December 11 2015

Check This Out, Miscellaneous

Home Ownership vs. Renting, Avoiding Germs, Christian Dating, Sentimental lies you might believe…I came across some really good stuff this week, check it out:

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Health Update: Starting Treatment Today

Family, Health Updates

As you may know, I was recently diagnosed with Grade 2 Olingodendroglioma, a kind of brain cancer. After my diagnosis, the next step was to figure out what kind of treatment to use to try to beat it. I’ve decided on the treatment, and am starting it today. In this post I want to share a little info on the treatment and how you can be praying, if you’re the praying for me type. Here’s what the road ahead looks like, for now.

My treatment: Chemotherapy

The treatment I’m starting is Temodar (Temozolomide), a kind of chemotherapy. Because I am a baby who is scared of needles, I was happy to learn Temodar is taken in pill form. I’ll take pills in the evening for five days, then for about three weeks I won’t take any pills. Week 3 I will get a blood test to check how the Temodar is affecting my blood/immune system, and Week 4 I’ll get another test to make sure I’m strong enough to start the next month of chemo.

Temodar is considered “well tolerated,” which means while it has side effects, they tend to be more tolerable for most patients. Of course you never know what the side effects are going to be for a particular person, but I’m hopeful. My doctor said the most common side effects are nausea, constipation, and fatigue. One thing about chemotherapy is that it is basically flooding your system with a toxic attack that is meant to kill the cancer, but the chemo doesn’t differentiate between cancer or healthy cells, so it can do a lot to you. At the least my immune system will be weaker while I’m on chemo, but we don’t know what other side effects I will have.

That’s no fun, but when it comes to ways to treat cancer effectively there aren’t many options. The side effects of chemo are worth enduring if it means effectively treating my cancer. I will say that I have done the research and reading, and decided this is the treatment path I am taking.

While I’m on chemo I will get MRIs every two months to see how the tumor is responding. The hope is that the tumor will shrink and eventually completely go away. If that happens I will get regular MRIs to monitor if/when the tumor returns. My understanding is that this kind of tumor almost always comes back eventually, and if that happens then we’ll start treatment again.

If the tumor does not respond to the chemotherapy we will likely look at radiation options. It would be great to avoid that because the side effects of radiation can be worse, and because of where the tumor is in my brain radiation is much more likely to affect me negatively.

What to pray for

If you pray, and you want to pray for me, please pray for these things:

  • Complete healing. I believe God can heal me, and I want to pray for that. Even if He doesn’t, I trust Him.
  • For the chemotherapy to work.
  • For me to experience minimal/no side effects from the chemo.
  • For me to have a healthy appetite, and an appetite for healthy things.
  • For my family: Janelle, Belle (9), Juliette (6), and Fiona (4). Specifically, for them to experience the love, grace, and provision of God in a way that grows their trust in Him.
  • For my daughters’ salvation.
  • For God to use my cancer to bring Himself glory and attention, that more people would see how good He is through this.

Thank you all so much for your love and prayers.

42 comments

Friday Five for 12-04-15

Check This Out, Miscellaneous

For this week, here’s some good stuff on marriage, singleness, God speaking, Advent, and some excellent videos on the Bible.

  • Kevin DeY0ung – 10 Diagnostic Questions For Your Marriage. Some great questions to ask yourself, or better yet talk to your spouse about, to help you think about where your relationship is.
  • Tim Challies – God Actually Spoke to Me. Do you want to hear from God? How do you think He speaks to you? This is a great article on how God speaks to us through His Word, and a warning about “hearing from God” outside of that context.
  • Katelynn Luedke – The Good Unwanted Gift of Singleness. I could’ve used this when I was single. It is an honest look at the pain of singleness, and how it is also a gift.
  • The Bible Project. This is a really cool collaboration of some churches and companies. On this site, they put together (free) videos to help you understand the overarching story of the Bible. They have videos that focus on just one book of the Bible, and other videos that trace specific themes throughout the Bible. They’re very well done, informative, and great for individuals or families to use to learn together.
  • Jon Bloom – Prepare Him Room. Are you celebrating Advent? Do you know what Advent is? Are you looking for simple resources to use during Advent? This article will help you with all of those, and could make these weeks leading up to Christmas much more meaningful than usual.
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