CT results and updates

Well, it's been a while since I posted last and a fair amount has happened.

There were some major complications with getting my insurance set up in early October. I had filled out all the forms and submitted them a month in advance, but they weren't processed. Then, I got a bad cold which moved my treatment to the first couple days of October, which meant there was almost no time to get everything sorted out. It meant a lot of hours on the phone with the State of Illinois, Aetna and my doctor. In the end, everyone did what they could to make it work, and as it turned out I was still not well enough on that day, so we postponed a few more days. Everything is settled now and I am thankful to have access to health insurance through the teacher's pension system, especially given the uncertainty around Obamacare or the high costs of Cobra.

I had a CT scan late in October. The spots on my lungs shrunk a few millimeters (~10-20%), which is a good sign that the cancer is responding to the treatment. The treatment is considerably harder on me than the previous ones, though. I still have unpredictable gastrointestinal issues, though that has improved slightly. In addition, I get severe acid reflux about days 3-7 after treatment, and then deal with side effects from that for the rest of the two week cycle. It's been very frustrating as nothing seems to really help. 

I also get an acne-like skin rash from the Erbitux that is controllable with medication, but nevertheless is irritating. It has caused issue with my finger and toe nails that are hard to get to clear up. I also have been losing significant amounts of my hair over the last couple of months, which isn't a huge deal, but is accompanied by a very itchy and sore scalp that at times drives me crazy. 

I hesitate to complain so much, but the worst part has really been the isolation that the treatment forces on me. The GI symptoms make it hard for me to be away from home for any length of time, so getting to church, Wheaton sporting events or to visit people has been virtually impossible. My friends and small group at church have been accommodating by letting me interact with them over Google Hangout, but it isn't exactly the same thing. I also miss working, both the people and having something that interests me to keep me focused and motivated.

I am hoping to take a break from treatment over the holidays. I need it both mentally and physically and the good results from the CT mean that it shouldn't be too big a risk. I am hoping to be able to get out and do some of what I've been unable to do, and to go home to see my family in Maine. 

I did make one trip to Maine in September for my niece's birthday. It was great to see them and I enjoyed doing it. However, in the planning of it, I had to think a lot more about money than I have in the past. A spur of the moment trip was never one that I had think twice about, but being on disability presents financial challenges that I haven't had to face for more than a decade. I'm hopeful that I will be able to return to work next Fall, so this won't be permanent, but there's no guarantee and in the meantime, I need to be wise in how much debt I rack up during this year. Having the opportunity to see my family, though, feels like a worthwhile use of my limited resources.

Thanks to all of you for your thoughts, words of encouragement and prayers. They mean a lot to me!

Disability approved

I got notice today that my disability was approved by the Teacher's Retirement System. It's good to have that settled. It will be good to have some money coming in over the next year, though it is only 40% of what I was making, so it is definitely an adjustment. I will also be able to get insurance through TRS starting in October, which is good, because continuing it through my district would have been very expensive.

My doctor did reduce the dose of one of my drugs a couple of treatments ago to try to reduce some of the side effects. It hasn't made much of a difference, but it might be slightly better. Unfortunately, the side effects are still so unpredictable that I'm not able to get out much. My next treatment is going to be on a Wednesday, so I'm hopeful that I'll at least be able to make it to church at least once every couple of weeks.

Thanks as always to all of you who have been sending me encouragement and praying for me. I really appreciate it.

Leave of absence

The last four weeks have been pretty challenging. The side effects that I had on irinotecan in the past have come back and more severely than before. Previously, the drug was the second drug, but in this treatment it is the primary one, so I don't have the option to drop it as I did last year. Unfortunately, the side effects mean that I have to stay close to the bathroom all the time. In the last two weeks, the only time that I left the apartment was to go to the doctor.

This makes teaching impossible, while on this treatment, so I have decided to request a one-year leave of absence. It wasn't an easy decision, but stopping treatment after just two rounds, while tempting, seemed like a bad idea.

My doctor did lower the dose going forward as even without working the side effects are not easy to live with. I'm hopeful that I'll be able to have some time where I feel better in between treatments, unlike these last four weeks. 

Thanks as always for your prayers and encouragement. It means a lot.

New treatment

It has been several months since I last posted. Back in April, the doctor and I decided that I would take a break from treatment, as the treatment I was on seemed to no longer be slowing the growth of the cancer. I also wanted a couple of months break to finish the school year and to get back my strength, before beginning a new cycle of treatment. I am thankful for the extended time I got to spend in the classroom and the chance to go home and visit my family in Maine, while not actively in treatment.

On Friday, I began a new treatment regimen. The new treatment uses the drug irinotecan, which has wreaked havoc on my gastrointestinal system in the past, and a new drug erbitux. I was at the cancer center for 7 and a half hours, but I didn't have to bring home the 5-FU pump home for two days anymore, so that was a plus.

So far, I am doing alright in terms of keeping the nausea under control with the medications that I have. I'd appreciate prayer that the more severe side effects will not manifest or will be more mild than in the past. Usually, those GI symptoms didn't become an issue for 4-6 into the treatment. I am worried about my ability to resume working in August, if the symptoms aren't more manageable this time around. Also, the erbitux can a really severe acne-like rash all over the body. I have medication that is meant to prevent that, and so far I haven't noticed anything, but it sounds like it can be a pretty dramatic reaction.

I don't know exactly what the Lord has in store for me over the next few months, but I have already received tangible signs of His provision in the event that I have to stop working. I am hopeful that I will be able to work more often without the pump, and that we can keep the other side effects under control, but if not, I am confident that the Lord will be with me, whatever the circumstances.

Thank you for continuing to keep me in your thoughts and prayers and for reaching out to me, even when I am bad about updating this blog. I really do appreciate it!

Hope amidst disheartening news

The last couple of days have delivered me a couple of depressing pieces of news. First, I learned yesterday that I will no longer qualify for paid sick leave from my union's sick bank. The sick bank is a voluntary program that my union offers, where sick days are donated by members from time-to-time and those days are then made available to members who have serious illnesses. The sick bank has helped me enormously over the last nine years. I am very thankful for the sacrifice that my fellow teachers have made to help me survive thus far without a major financial hit. However, I had reached the limit of days allowed last week. There was a discussion of a policy change that might have allowed me to continue to withdraw days, but I learned yesterday that it wasn't going to happen.

As a result, I have a number of decisions to make. I have known this was a possibility since October, so I have been planning for how I would survive the $15,000 plus reduction in my salary over the next five months. I have a plan that will get me through this time, but not without feeling the financial pain involved. For that reason, I am looking at things like possibly trying to find a cheaper place to live in the meantime, but it would have to be a significant drop in rent to make it worth the change, and that would likely result in a significant drop in my quality of life.

At the moment, I don't have a good alternative to my original plan, but I am praying about it and trying to leave my options open, so I don't close off any avenues. I'd appreciate your prayers as I consider what this all means and what the Lord would have me do for the rest of this school year, and going forward.

The other disheartening news that I received today was the executive order, which also wasn't a surprise, banning all refugees for a time and Syrian refugees indefinitely. I am disheartened because I believe that our common humanity demands that we stand with refugees who have been driven from their homes by tyranny and war. I also am saddened, because I believe that there is a work of the Holy Spirit going on that is bringing people who would have lived with no real contact with the Gospel in their home country to a place where there are true Christians willing to show them what it means to love like Christ, but a procedural wall is being erected to keep them away. It is very sad to me that it has come to this point.

However, in both situations I have not lost hope. The same God who got me through the last nine years is there for me now. All of you have supported me with your words of encouragement, prayers and generosity for nine years. I'm not in immediate financial distress, but I know that I have family and friends who are looking out for me.

Likewise, while I am saddened by the changes our country is implementing, I know that there are lots of people still will to stand in the gap. For example, the people of World Relief and the churches that work with them are going to continue their mission to help refugees regardless of where they come from or their religion, because that's what Christ called us to do (see the parable of the Good Samaritan.) I will continue to support the mission of World Relief, even in my financial distress, because I know that my distress is nothing compared to that of people whose homes have been destroyed by war, or their lives threatened by dictators or homicidal war lords. If our country will no longer accept these people, it doesn't mean that we can't reach out to those already here and those across borders to those looking for a place of safety and love.

Thanks for standing by me these last nine years, and I look forward to seeing what God has in store for me going forward.

Refugees are my neighbors

This post is a little different for this blog, but I feel a need to say something about the effects of a recent decision to make changes to the Refugee Admissions Program, including cutting funding for World Relief and other organizations that help refugees settle and adjust to life in America.

I have strong opinions about the advisability of this change in policy, but I don’t feel like wading fully into that discussion right now, because it is nuanced and honest people can disagree about what is the appropriate role for the United States. I already have a lot to say here, so I’m choosing to focus on my faith and how it guides my personal behavior in response to the refugee and displaced persons crisis.

That crisis has been caused by violence and other factors which have led 65 million people to flee their homes in search of a safer, better place to live. While the crisis is complex, I believe that the Bible is clear about the responsibility that I, as a Christian, and that my fellow Christians have as the Church. We are called to actively demonstrate our love for people, even when to do so would put us in physical or economic danger and it doesn’t matter whether we like the people or not (see Luke 6:27-31 below.)

The Bible is full of calls on believers to have compassion. In Deuteronomy 24:17–18, Moses tells the people to treat fairly the foreigner and fatherless in their midst, because they knew what it was to be slaves themselves. God had mercy on the plight of the Hebrews in Egypt (Deuteronomy 6:5) and He expected them to act likewise toward those in their midst who were downtrodden.

The Prophet Isaiah spoke directly to the issue of how to respond to an influx of people fleeing the destruction of their homes by a foreign invader:

3 “Give counsel; grant justice;
          make your shade like night
          at the height of noon;
          shelter the outcasts;
          do not reveal the fugitive; 

4 let the outcasts of Moab sojourn among you;
          be a shelter to them from the destroyer.
   When the oppressor is no more,
          and destruction has ceased,
          and he who tramples underfoothas vanished from the land, 

5 then a throne will be established
          in steadfast love,
   and on it will sit in faithfulness
          in the tent of David
          one who judges and seeks justice
          and is swift to do righteousness.”
         

                               Isaiah 16:3-5


I understand that the fear people feel is real, but I think this verse fits the current situation well. The reason there were "outcasts" and "fugitives" was because the "destroyer", Assyria (no relationship to modern Syria), was a serious threat to all the peoples of the area. They were willing to and did enthusiastically commit atrocities as a warning to the next state that if you resist this will happen to you. Israel's fear was legitimate, yet God was telling them through Isaiah to accept and protect the refugees anyway.

America isn't a theocracy run by the will of God, so I don't think this argument applies broadly to the national discussion (I think human compassion is a good argument, though), but it does apply to those of us who claim to be Christians. As someone who professes to follow Christ, the origin of the name Christian, I have a responsibility to care for people who are outcasts and fleeing destruction and oppression (see Matthew 25:35-46.) To be clear, Moabites did not worshipp the same God and yet they were told to shelter them, which seems to reject the idea of some that our mercy should exclusively, or at least initially only be extended to Christian refugees.

I am not debating the policy of the government here, but the Israelites didn’t have the right to pick and choose who his command applied to and I don’t either. When Jesus explained the Leviticus 19:18 command to "love your neighbor as yourself" by applying it to the Samaritans, whom His contemporaries despised, He took away any further excuses. The people at the time had even gone so far as to tact on the line, “…and hate your enemies” (Matthew 5:43). Jesus was having none of that and said:

27 “But I say to you who hear, Love your enemies, do good to those who hate you, 28 bless those who curse you, pray for those who abuse you. 29 To one who strikes you on the cheek, offer the other also, and from one who takes away your cloak do not withhold your tunic either. 30 Give to everyone who begs from you, and from one who takes away your goods do not demand them back. 31 And as you wish that others would do to you, do so to them.

                                              Luke 6:27-31

It's a radical command Jesus is making, but if I call myself a follower of Christ, then I need to ask if living up to His command. The part of the administration’s decision that lowers funding for refugee resettlement programs belies any claim that my tax dollars are somehow to stand as my support for refugees.

Also, prayer is powerful and effective, but it cannot be my only action. The list Jesus gives to define loving my enemies is full of difficult, painful actions with real world results. If that is how I am to react to my enemies, how should I act when I am presented with families fleeing the death and chaos of Syria, Somalia, Iraq, Burma, etc., which is caused by people that are truly my enemies. I can't help but see these people fleeing violence, terror and genocide as my neighbors. I feel compelled to find ways to tangibly live out the love that I am commanded to feel for them.

I wish I had an easy answer. I have a start, but that’s it. I’m going to be more supportive of World Relief and the churches working with them, because they're taking seriously the call to care for people fleeing violence and oppression. I’m going to look for more ways to tangibly get involved and help families trying to adjust to life in a new and usually very different country from the one the called home.

Nine years and a day later

That title could almost refer to how long it's been since I last made a blog post, but it actually refers to the date of my first colonoscopy, on January 11th, 2008, when it was confirmed that the bleeding I'd been having for months was in fact cancer. It's been a long road since that date, and many things have changed in my life since then, but much has stayed the same.

Nine years ago today, my brother spontaneously flew out to watch the Patriots play in the NFL playoffs and to spend the weekend with me. On January 11, 2017, he was here in Illinois to take me to treatment, flying in and out from Maine to Illinois within a 24-hour period, as he's done multiple times this year. My sisters have made it possible for my mom to fly out on a regular basis to be with me during treatments. My friends, colleagues and employer have been very supportive, the latter by providing a full-time sub, during my treatments. My professors bent over backwards for all of those nine years to accommodate my needs and to help me finish my Ph.D. on my own merits, but I wouldn't have finished without their help and encouragement.

The ultimate consistency in my life these last nine years has been the Lord. If you looked just at me that would seem to make no sense. That weekend in 2008, my brother and I went to College Church with our sisters who were living in the area at the time, and it was my first day in church in months. Yet one of the best sermons I have ever heard was preached that Sunday by their Youth Pastor Jay Thomas. It was a sermon about what it meant to be ready to meet the Lord in Heaven. The Lord knew what I needed to hear that day to have the courage to face the next few weeks of uncertainty.

Over the next 6 years, I would have moments where I returned to the Lord, but longer ones where I let sin and laziness creep into my life and separate me from him. However, the Lord was there for me every time I returned.

In 2014, after a couple of short stints in other churches and long stints not, He used a sense of desperation in my life and pain from radiation treatments to lead me to Church of the Resurrection in Wheaton, which ultimately led to a renewal of my baptismal vows. I've been at the church for more two and a half years now. I am not a perfect person, but I have people in my life now that I feel comfortable sharing my struggles and who I can support as well. The Lord has brought about great healing in my life these last nine years, and that doesn't include the way that He has held my cancer at bay.

It appears that I will soon be facing a new chapter in this journey. By the end of the month, I will likely have used up the paid sick days provided by my union's sick bank. They have been very generous to me over the nine years, and except for the 2.5 days I was short in 2008, I haven't had to pay another non-comp day despite a few different stays in the hospital, two surgeries and multiple treatments. However, it has been near impossible to stockpile any of my own days since then. That has meant that I have had to draw upon the sick bank when my personal days would run out. The sick back committee, and my fellow teachers have been very generous to me. I am thankfully that I have been able to go these many years without incurring the unpaid days that I have might have in a different job.

Most likely, that will come to an end in a couple of weeks. I believe that am prepared to cover the shortfall over the next few months, but at my current rate of absences it will be a significant financial hit. I also need to make some decisions about next school year and whether I can afford to take a year off and focus on treatment, which includes issues of disability and being able to afford insurance, especially with the uncertainty surrounding the Affordable Care Act and whatever might or might not replace it. I trust that the Lord knows what is best and will be with me as He has been over the past nine years. Please pray that I will have the wisdom to make smart decisions, both in the short term and long term, regarding my financial situation. There's no immediate emergency, but I want to make the right decisions, preferably giving me flexibility down the road, including keeping my position as a teacher, if possible.

Thank you to all of you for your prayers, support and encouragement. Right now the cancer is as advanced as it has been, but it is also under control. I don't really know where things will go from here, but I am thankful to God that I have so many friends and family members who care about me and who are a constant encouragement to me. I couldn't have imagined nine years ago that this is where I would be. Even as look into an uncertain future, I have hope that God's plan for my life is better than the one that I would pick for myself.

11 For I know the plans I have for you, declares the LORD, plans for welfare and not for evil, to give you a future and a hope. 12 Then you will call upon me and come and pray to me, and I will hear you. 13 You will seek me and find me, when you seek me with all your heart. 

Jeremiah 29:11-13 (ESV)