December 3 update: Spent 8 days in the hospital with breathing/oxygen issues. Extremely weak from the lack of activity, but glad to be home and feeling better.
And some very good news: The cancer is in complete remission! They are delaying the last couple infusions because of the breathing issues, but if the hospital stay cured the latter then I just need to focus on regaining use of my right foot and getting through the final treatments.
Had a few good witness opportunities in the hospital, so that was a blessing.
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November 15 update: Some good news — spent 5 days in the hospital with Covid (which they originally thought was pneumonia) and feel much better. And my foot showed some signs of motion, which is huge! Hopefully, the nerves are slowly healing. If they ever come all the way back, I will never stop dancing with my wife.
This song captures our sentiments well, although by the grace of Jesus our faith has always stayed strong.
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November 2 update: Had 4th infusion. Feeling lousy all the time. Trying new nausea meds. Leg isn’t in pain, and I’ve been able to dial back the number of pain meds a bit, so that’s good. Hope you all are well!
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October 15 update: Plodding along. Appetite and eating are a constant challenge. Just had third infusion (out of 6). No improvement in the leg (still completely immobile), but glad that the pain is under control. Will get scan in 6 weeks or so.
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I often think of this when people ask us why our faith stays the same throughout trials. It is because we trust in the real Jesus and what He has done for us, and not because of religiosity.
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September 26 update: Finally, we have the pain relatively under control. It only took four months! Very grateful for that. Nerve pain is such a mystery. Very few medicines work on the searing/throbbing/burning. The first two rounds of immunotherapy seem to be working. New rounds every 3 weeks, then a scan later in October. The lower right leg is still completely paralyzed. Praying for the day when it has any movement at all. As a bonus, I had Covid in late June and got a root canal last month.
This situation led to a great witness conversation with my neighbor last night. He’s not there yet, but hopefully, some seeds were planted.
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September 11 update: Started treatments and have had no major side effects, which is a good sign. Pain management is under control, but still a long ways to go. They are front-loading the treatments, so I’ll get a couple more in the next two weeks. We are very grateful to be at this stage!
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August 27, 2022 update:
Lots of pain in the last couple of days in my leg, despite all the meds. And back is starting to hurt as it has in the past when the tumors press on the kidney or something else. So glad to be starting chemo and immunotherapy in a few days. Prayer requests: Healing, of course, opportunities to witness and to regain the use of my paralyzed right lower leg.
I was meditating on Job 1:20-22 when it came up when reviewing memory verses. Every day is a great day to fall on the ground and worship.
Job 1:20–22 Then Job arose and tore his robe and shaved his head and fell on the ground and worshiped. And he said, “Naked I came from my mother’s womb, and naked shall I return. The LORD gave, and the LORD has taken away; blessed be the name of the LORD.” In all this Job did not sin or charge God with wrong.
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August 20, 2022 update: Good news – looks like I’m in the clinical trial, and I start chemo later this month. Excited about that, though it will be a long journey to recover feeling and strength in my leg. I am so eager to get off the pain meds, but it could still be a while. But good news overall.
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August 16, 2022 update: Got official surgical biopsy results, so today, we started the process to get into a clinical trial. I hope everything moves quickly from here so I can start chemo immediately. Lost a lot of weight because pain meds kill my appetite and cause nausea. I’ve been trying to navigate through that the last few months.
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Yes, it is back. For the fourth time. I finished the T-cell transplant process in early January, and it was already coming back as early as April/May. I have three spots where it returned – by my kidney, my mid-section, and my right thigh. The last one is extremely rare and was tough to diagnose. It is pressing on my sciatic nerve and has caused great pain for a couple months. My right foot is immobile for now. I was actually glad that a tumor was causing this because the MRI had already shown that it wasn’t my back. If it hadn’t been this tumor causing it, then it would have been quite the mystery. We’ve tried many pain control options for the leg, but most have failed.
Next step: Biopsy to confirm the type of cancer, and then hopefully I’ll qualify for a clinical trial that looks promising. If that doesn’t work, then options are limited.
We are blessed at being good at enjoying whatever time we have. Even though we only had a few months in the first half of the year when I was feeling healthy and energetic, we had a great time doing normal things and getting back to dancing together. We were even able to do a dance competition. God willing, we’ll get some remission and healing soon.
As always, we completely trust in Jesus and pray that He will use all this for his glory.
More history and perspective at Cancer 3.
I probably won’t be blogging for a while. These things take a lot of time and focus. But I’ll still try to read your blogs. And I want to finally finish a book I’ve been working on called Manage Your Mission. It is about the approach I’ve taken to life the last few decades with respect to the “7 Fs” (Faith, Family, Fitness, Field (vocation), Friends, Fun (entertainment), and Finance) that has worked spectacularly well. The idea is to ensure you have your priorities straight for the categories and that you have concrete ways to excel in each of them. I couldn’t control the cancers, but I controlled what I could and have no regrets about that course.
Neil, I’m sorry that you have to face cancer again. I hope they will let you into that trial. I will pray about your situation to the Boss.
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Hi Neil, we’re praying the LORD will bring you through.
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Wow man. I had no idea. I love your attitude. Your awesome memes and commentary will be missed, but yeah. Focus on your health and that book. I look forward to its completion!
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So sorry to hear this. Wish there was something I (or anyone else) could do. Definitely praying for you and your family.
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Wow praying brother
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Add me to the list, my friend.
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Sorry to hear about this. I’ve been praying for you every day and I’ll certainly keep it up.
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Praying for you now.
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Any updates?
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Yes, thanks for asking. Got official surgical biopsy results, so today, we started the process to get into a clinical trial. I hope everything moves quickly from here so I can start chemo immediately. Lost a lot of weight because pain meds kill my appetite and cause nausea. I’ve been trying to navigate through that the last few months.
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I’ll continue to pray for you.
Just wondering…should you not for some reason be eligible, would there not still be some kind of treatment…chemo or whatever…available for you?
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Possibly, if something new comes up.
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Great news about the trial!!! I pray it goes well and above all, quickly! We need you, man!
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Great news about the trial. Praying it works.
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Woudl you be able to give us an update?
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Yes, thanks for checking. Lots of pain in the last couple of days in my leg, despite all the meds. And back is starting to hurt as it has in the past when the tumors press on the kidney or something else. So glad to be starting chemo and immunotherapy in a few days. Prayer requests: Healing, of course, opportunities to witness and to regain use of my paralyzed right lower leg.
I was meditating on Job 1:20-22 when it came up when reviewing memory verses. Every day is a great day to fall on the ground and worship.
Job 1:20–22 Then Job arose and tore his robe and shaved his head and fell on the ground and worshiped. And he said, “Naked I came from my mother’s womb, and naked shall I return. The LORD gave, and the LORD has taken away; blessed be the name of the LORD.” In all this Job did not sin or charge God with wrong.
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Prayed about you today! Thinking of you.
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Thanks! Enjoyed your latest Podcast yesterday. I appreciate the continued excellence.
Just added this update: September 11 update: Started treatments and have had no major side effects, which is a good sign. Pain management is under control, but still a long ways to go. They are front-loading the treatments, so I’ll get a couple more in the next two weeks. We are very grateful to be at this stage!
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Thanks so much for listening!
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Hey Eternity (Neil)! Just stoppin by to say what up man. I had you in my thoughts lately. Was glad to read your Sept 11th update. Hope you’re staying in good spirits, and wishing much strength to your family.
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Hi Rock – thanks for visiting and commenting! I appreciate it. Treatment is moving along here. I always enjoy your posts and your comments at Sigma.
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Posting the update here in case anyone subscribed to the comments: September 26 update: Finally, we have the pain relatively under control. It only took four months! Very grateful for that. Nerve pain is such a mystery. Very few medicines work on the searing/throbbing/burning. The first two rounds of immunotherapy seem to be working. New rounds every 3 weeks, then a scan later in October. The lower right leg is still completely paralyzed. Praying for the day when it has any movement at all. This situation led to a great witness conversation with my neighbor last night. He’s not there yet, but hopefully, some seeds were planted.
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So very happy to hear of the progress! I pray it continues. God is great!
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Very good news to hear. Not just yourself, but your neighbor as well. We will be praying for both of you.
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I just wanted to check in and tell you that I am praying about your situation.
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Thanks, my friend! Looking forward to listening to your latest Podcast.
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Is there any update about how the treatments are going?
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Thanks for checking! Plodding along. Appetite and eating are a constant challenge. Just had third infusion. No improvement in the leg (still completely immobile), but glad that the pain is under control.
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OK, I am continuing to pray for a recovery!
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So glad to hear what sounds like improvement. (Feel free to ship me your left-over pain meds. 😉
This “feeling lousy all the time” part…is that the illness or the treatment which causes this? Hope it’s the latter.
Prayers are ongoing.
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I think it is much more about the treatment and side effects than the illness.
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I’d consider that a plus.
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I keep checking in for updates. Your last one was great to read. God bless.
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Thanks, my friend! Just posted another update – it has been a bit of a roller coaster.
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That is amazing news about the cancer. So glad to hear that. Sorry about the other problems. I’m sure they’re bad enough (since you had to go to the hospital) but they seem minor snags compared to the cancer. God is doing fantastic things and it is so good to hear. Continue to heal. You aren’t alone in this fight.
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Thanks, Jim! I hope you are doing well.
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