Another year, another update

Well, it's been almost seven months since my last update, so somethings don't change! I have spent these months living in a condo on the beach in Maine. It's a very popular place to be in July and August! In the winter, it's not quite as fashionable, which is why I can afford it, but it's still beautiful.

This was from October when it was still occasionally nice enough to sit outside and watch the sunrise.

The best part of being here has been being near my family. It's been especially great to see my niece Lillian and nephews, Daniel and Oliver on a regular basis. That was something I'd missed out on the last nine plus years since Daniel first arrived. They're down at Disney World this week and I'm looking forward to seeing all the pictures from their trip!

Healthwise, I've been doing okay. I have taken a break from chemo over this time, because I needed a physical and mental break. It has been nice not to feel sick all the time and to have more trust in my body, so that I can get out some. That said, I still have some issues with the hernias from my previous surgery and neuropathy in my right leg and foot from previous radiation treatments.

Also, it has been a struggle to not be working, financially, mentally and physically. I wasn't physically ready to go back to teaching last August and it's been difficult to get my strength back between not having a set daily routine and the limitations of my leg/foot. I am hoping to be able to work next school year and I know I need to gain back some of my strength and endurance, if that is going to happen.

I've also struggled being away from my church and friends in Illinois. I hadn't been able to be as engaged with them last year, while I was in treatment, but being a thousand miles away hasn't exactly improved that situation. I did visit a couple of churches early on, but it's been hard to get myself up and out Sunday mornings to look for a local church since then. Having the chance to go back to Resurrection is definitely a factor in my hopes to be able to return to Illinois to teach.

It took some time, but I was able to find an oncologist out here. First, I met with a doctor at the Dana-Farber Cancer Institute in Boston, through a connection of my sister, Janet. He confirmed much of what my doctor in Chicago had been doing, and suggested restarting my previous treatment when I was ready to resume chemo. He referred me to a doctor in Portland, who had a similar recommendation. The problem is that I am not sure I'm willing to go back on that treatment.

Over the 11 plus years since my diagnosis, the time that I was on irinotecan have been the worst for me, because of the gastrointestinal side effects. I felt very isolated, because I couldn't trust my body to go out, even near the end of the cycle. I don't want to do that treatment again, but it seemed to still be somewhat effective against my cancer the last time we used it. It's hard for me to say that I want to give up on a treatment that seemed to be working, but I kind of do.

After seeing my new oncologist last week, I'm taking a couple of weeks to decide whether I'm going to start treatment again (possibly with irinotecan or with some other, possibly less effective and not necessarily easier option) or wait another 3 months. While the cancer (originally rectal, that has now metastasized primarily to my lungs) has been progressing slowly, but steadily over the last two scans, I don't have any noticeable symptoms from it yet. However, it's hard to know how much longer that will be the case.

One of the primary factors in my decision is attempting to teach again starting in August. Doing treatment would probably give me the best chance of keeping the disease at bay for the next school year. The problem is that I would need a lot of lead time to recover from the side effects and be ready to work, so I could probably only do it for two months.

I don't know whether those two months are best used to beat back the cancer a bit, while weakening myself further with the side effects of the chemo. Alternately, I could use those two months trying to be more active and get myself ready for working full-time for the first time in more than 2 years. An inherent risk in the latter is that my chances of having symptoms of the tumors in my lungs would increase.

Another factor is that I have a visceral reaction against the idea of starting (essentially any) treatment again. That isn't the only factor in my decision, but it is a hard one to ignore. I'm tired of dealing with chemo and treatments, despite this extended break I've had. I don't know if I can get myself to the point where I'm ready to go back to it again. Sometimes that feels like just wishful thinking, though, because the cancer isn't asking whether I want it to grow or not. It's hard to weigh the value of whatever benefit the chemo provides, against the negative effects of it on my quality of life.

Please pray for me as I continue to weigh these decisions, in the immediate about treatment, and also about plans for next school year. I have to move out of my current place in mid-May, so I need to find at least a temporary place to live for the summer, and possibly longer. Not being 100% sure about the next school year makes it difficult to plan. The financial hardship of being on disability for two years, and working only part time the previous year, is also a major factor. I've been able to stay afloat to this point, but if I can't end up working, then I will need to make some major changes.

Sorry for always taking so long between updates and then writing a novel! It's been hard to think what I'd put in an update, because things have been rather unclear to me during this time. Thank you to those of you have supported me over the last eleven years, and in particular more recent times. I couldn't have made it to this point without your prayers, words of encouragement, financial help and helping hands! I'm sad it's been so long since I've seen many of you and hope that I will again soon!

Moving

I've decided to move back to Maine, at least temporarily, to try to save some money and be closer family. Like the decision to take another year leave of absence from teaching, this was a very difficult decision. I've loved living in Illinois and will miss my church and friends, but I am excited to be around my family more, especially my niece and nephews. 

I found a temporary "winter" rental in Old Orchard Beach that is pretty affordable. It's basically a studio apartment, but it's a good deal and seems like a nice place. I should be moving in during the second week of September.

That said, I am disappointed to be leaving Illinois. Unfortunately, there really weren't any apartments at my price point that met my needs out here. I'm hoping that I might be able to return next year, but will have to wait and see. In the meantime, I hope to see many of my Illinois friends before I leave in a couple of weeks.

Thank you for all the encouraging words after I made my decision about work. It was a difficult decision, in part because I knew it would probably mean leaving. Thank you to all of you who have supported me financially this past year, including through the Go Fund Me page that my sister established. It enabled me to stay out here this last year, while still being able to see family in between treatments. It means a lot to me that you have sacrificed in this way on my behalf.

Please continue to pray for me as I make this transition. I know that there will be really good things about the move, but leaving behind the relationships that I've built over the last 21 years and my church won't be easy. 

Difficult Decision

After months of indecision, I am going to take another leave of absence from work. I'm disappointed that I won't be able to teach again this year. I could use your prayers for peace about this decision, as I am still unsure about it, and guidance about the next year. In the next couple of weeks, I need to decide whether I am going to stay in Illinois or move back to Maine, and eventually will have to make decisions about my treatment going forward. 

This has been a long and challenging year, because of the side effects of my chemo treatments. Overall, the chemo kept the cancer in check, which is a blessing, but being out of work and unable to trust my body because of the side effects was frustrating and very isolating. If I am healthier cancer-wise after this year, I feel less healthy in most other respects. 

For that reason among others, I really had been hoping to return to teaching this coming school year. I would need to be completely off of treatment in order to do that, and the slow moving nature of my chemo (so far) made that a possibility. However, there were no guarantees and in early July my doctor was non-committal past early October. That presented me with a dilemma of whether I should give working a chance and risk having to leave mid-year or stay on disability for another year. 

This has been the most difficult decision that I have ever made. I can see positives, negatives, and huge risks to both options. I really have been struggling with this decision since February, but had decided to start the process of returning, hoping that things would be more clear at the year progressed. Frustratingly, I haven't felt strongly about either option for more than a day or two at most, and then would swing wildly back to the other decision, or return to feeling like there was no way I could make a choice. 

I waited until this most recent CT scan, which showed slight improvement in the tumors on my lungs, hoping that it would clarify things, but I was left with the same uncertainty. Even now, as I've made a "decision", I am not sure that it was the right one, or that there even is a "right" decision.  

A number of things concern me about this decision. First, it is a huge financial hit for me to not work for another school year. Essentially, I have been living on 40% of my salary for a year and a half, as I was only able to work part-time in early 2017, before taking this past school year off completely. The generosity of family, friends and my parents' church helped me to stay in my apartment this past year, but I have taken on significant debt to supplement that. I am not able to continue doing that, so I need to find a way to drastically cut my expenses.

I am also concerned about how isolated I felt during treatments this past year. I had lots of people reaching out to me and my mom came to visit once a month, but the side effects made it nearly impossible for me to venture out of my apartment or to invite other people to visit. Part of what makes me consider moving to Maine is being closer to my family and hopefully reducing some of that isolation while I am in active treatment.

To some extent, the side effects are specific to the type of chemo that I have been on, but since it seems to still be effective it would be risky to give up on it. However, over the last few months I have felt ready to move onto the next treatment option, and I still feel that way at times. In the meantime, I am thankful for at least a break from the chemo, so I can complete this transition period.

I am also drawn to staying here in Illinois, because of the many friendships I have developed over the last 21 years and my church community. I hesitate to leave, especially as I now have at least a short period of time where I can re-engage those relationships as my body recovers from treatment. If staying here is going to make sense, I will need to figure out a way to still be able to visit my family and to avoid the isolation that I felt this past year, when/if I return to my current chemo treatment.

While I'm not sure if I have made the "right" decision, I do trust that God has a plan for me and that it is good, even in the midst of suffering. The generosity, encouragement and prayers of so many people have helped to get me through this last year. The best moments of light in a difficult year were the direct result of the generosity and concern of my family and friends. Whether it was the ability to go home to visit family, participate in my church small groups via videoconferencing or my mom being able to fly out here once a month, you all did things that helped me to survive this past year. I am very thankful for your support, encouragement and you continuing to hold me up in prayer.

Thank you!

Thanks to many of you who have reached out on Facebook or through email to wish me a Happy Birthday! I've spent most of the day watching basketball, and seeing my bracket get worse and worse.

I was supposed to have treatment on Wednesday, but I have been experiencing abdominal pain and had some vomiting last week. I had similar symptoms a month ago, as well. I think the symptoms are related to hernias that I have, but they haven't been this severe since I had an intestinal blockage back in 2013. I am slowly starting to feel better. However, the recurrence of it twice in a month along with a bad cold made my doctor decide to postpone my treatment until April. I'm going to have a CT scan before then to check on the state of the cancer and to see whether there is anything new going on with the hernias since the last scan.

My mom has been out here this week. The family had spent a week or so down at Disney World. I managed to get down there for a couple of days, then Mom flew here on Monday. It was great to spend time with my family, and especially my niece and nephews!

I have taken the first steps toward a planned return to teaching this fall. It has been hard being away from work this last year. It has been a significant financial strain, but even more it has been very isolating, as the side effects make it difficult for me to go out much. I am looking forward to returning to the classroom this August, assuming that my body and the cancer make that possible. Thank you to those who have been praying for me as I made that decision and those who sent me words of encouragement.

I also want to thank those of you who have supported me through the GoFundMe page that my sister, Janet, set up. It means a lot to me that so many would make that sacrifice to help me get through this year. Among other things, that money helped me get to Florida earlier this month, something which was very important to me.

I don't know exactly what the next year and beyond will hold, but I am very thankful for all of you who have come alongside me.

10 years

Friday, January 11, 2008, I woke up from my first colonoscopy to learn that I had cancer. My brother-in-law, Phillip, sat with me, called the rest of my family to let them know and drove me home on a snowy day.

The next day, I had my first of now dozens of CT scans. That afternoon I watched the then-undefeated Patriots in their playoff game with my brother, Mark, who decided to fly in from Maine to watch the game with me.

I went to church on Sunday, for the first time in months, and heard a sermon on heaven. I went to lunch with my sisters, Janet and Elizabeth and my brothers.

On Monday, I went back to work at Norton Creek where my colleagues rallied behind me with their encouragement and generosity. Plans were made to find the best substitute teacher possible for my students.

Later that week, I announced a women's basketball game at Wheaton College, something I'd had the pleasure of doing for 5 years at that point.

Family, friends, students and their parents wrote encouraging notes, sent gift cards, money or care packages full of things that I might need. Family friends bought me a recliner.

Many people prayed for me, some that I knew well, and some that I had never met. My parents flew out from Maine to be there for my surgery and my mom made plans to stay with me for as long as I needed.

All of that happened in the two weeks between my diagnosis and my first surgery, but it could describe the response of those same people each time over the next ten years that I was faced with a crisis brought about by my cancer. Those same people have continued to support me, love me and pray for me. I don't think I realized that day 10 years ago that I was so blessed.

I had spent months ignoring symptoms, because I didn't really want to acknowledge what my body was telling me: that something wasn't right. I self-diagnosed and self-medicated, hoping that it would go away. A lot of that came from fear and embarrassment. During those months, I wasn't ready to admit that there might be something wrong, that I couldn't fix, especially something that seemed especially private.

At different times over the last ten years, I have had to struggle to accept the new "normal" that the cancer and my treatments have wrought. It was rarely an easy process, but my support network of people who care about me has been there all along the way. My mom and my siblings have flown in to take me to treatment, and when they can't make it, my friend Brett takes time off of work to take me. My friends in the athletic department at Wheaton College give him the flexibility to do this.

When I have had medical emergencies, my principals have stepped up to lessen the stress upon my students, by finding excellent substitutes, like Cathy McGee and Linda Smith. In recent years when treatment made it difficult for me to work on a consistent basis, I have co-taught with Martha Paschke and Jennifer Smolek.

When chemo made it hard for me to get to my graduate school classes, professors like Jan Holt and Jennifer Schmidt went the extra mile to make it possible for me to video conference into the class. As my advisor, Professor Schmidt would meet with me at Panera, Sweet Tomatoes, or even her daughters' gymnastics studio to talk about my dissertation. Lee Shumow and the rest of my dissertation committee made it possible for me to complete my dissertation and graduate in the midst of treatment.

My friends and small group members at church prayed for me and cared for me. My parents' church sent me money to help pay for my rent during this year as I went on medical leave.

I hesitate to stop there, because I know that I am leaving people and examples out, but I hope you get the point. Ten years ago, I was afraid to admit that something was wrong, until I couldn't ignore it any longer. Over those ten years when I have faced problems that I couldn't surmount on my own, God provided all of you to come around me and support me and help me get through it.

It's tempting to say that everything is okay. I struggled to write this update at first, because I couldn't figure out how to describe how I am feeling. I couldn't figure out the positive spin that I wanted to put on my current situation. It's not that things are awful; as I've described above and much more, there are plenty of positive lights in my life. For one, I didn't even mention my two nephews and niece who have been born in those ten years. I can't express how much I love them and how much I enjoy the time I get to spend with them.

Yet, I need to be honest that things are not where I would want them to be. The current treatment regimen has been really hard on me physically. Not being able to work or go out much at all has taken a toll on me psychologically and spiritually. It was necessary that I take this time away from work, but it is hard for me to see it as a good thing. Beyond the significant financial strain, I miss having some place to be everyday, people to interact with and problems to solve that challenge me to think and be creative. Teaching, like any job, isn't easy, but I miss it.

In the next few weeks, I need to decide whether I am going to return to teach next year or not. There are multiple considerations that go into that decision: the state of the cancer, money, possible loss of tenure, the severity of the treatment. I think it's going to be a difficult decision and would appreciate your prayers for wisdom.

After a break for the holidays, I restart treatment on Wednesday. I anticipate that I will be in treatment for at least the next six months, whether I decide to work next year or not, and that is a daunting prospect. I've been starting to feel better, and I'm not looking forward to restarting the treatments.

I hope it is clear from this (ridiculously long) post that I am thankful for all of the ways that you have supported me, through prayer, encouragement and your generosity of time and money. It hasn't been an easy 10 years, but many people don't get anywhere close to ten years with metastatic rectal cancer, so I am not complaining (or trying not to complain too much!) I am blessed to have all of you in my life. Thank you!

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.