Quick Update

I wanted to give you all a quick update on how my radiation went. I had 10 sessions and finished on Friday, March 19th. It takes about 2-3 weeks before the radiation begins to start having an effect, so I'm just on the leading edge of that. I haven't noticed much improvement, but I am beginning to notice some irritation on the skin around my eye and my temple, so I think that's a sign that the effects are starting to show up.

I spoke to the doctor on the phone on Friday and he said that he expects that I will start to notice a difference over the next couple of weeks. Other than that irritation and some occasional minor pain, I mostly feel very fatigued, which is the number 1 side effect of radiation.

I'm looking forward to spending Easter Sunday with my family and capitalizing on the fact that my and I are fully vaccinated. It will be wonderful to spend time with all of them celebrating Jesus' resurrection. Please pray that I will be feeling well enough to enjoy it. My plan is to make Prime Rib, something I usually do for Christmas, but we couldn't this year because of the pandemic. 

Thanks for all your encouraging words and prayers. I'll try to update again in a couple of weeks. 

Eyeing a new journey

So, I was going to write a bunch of eye puns and idioms throughout this update, but I can't really see myself doing that (okay, so just one.) Rather, I'm just going to jump into an update of some new developments with my cancer.

3 weeks ago today, I had a telehealth visit with a local convenient care place here in Maine. I'd been having some congestion and was noticing that I would get double vision when I looked to the far right or left. The provider put me on an antibiotic and some of the symptoms of the sinus infection improved, but my vision issues continued, along with some pain (mostly feeling like a bad sinus headache.)

Last Sunday, it got to the point that I decided to call the on-call doctor at my primary care facility. He recommended that I go to the ER. By that point, I'd used the internet to professionally self-diagnose orbital cellulitis, as pretty much all of the symptoms fit. I figured I'd be admitted for a few days IV antibiotics and it would clear up.

It wasn't until I was getting ready for a CT of my head that it occurred to me that it could be a tumor. I'm not sure why this never occurred to me before. I'd certainly known it was possible that the cancer could spread anywhere, but I was rather convinced that this was just and infection that had gotten out of hand, despite the fact that I didn't have a fever.

Eventually, I met every ER doctor and PA at this small town ER as the CT showed a mass behind my right eye. They were a bit overwhelmed, I think, and one recommended that if I was told to go to the ER again I should go to the one in Portland, as I had originally intended. It was a long night, but the timing was good as over the last week my right eye has gone from having double vision and some irritation to very swelled and rather hard to see out of even with my other eye closed.

I am planning to begin radiation treatments in Maine on Monday. It will be five days a week for two weeks. The radiation oncologist is confident that they can stop the growth of the tumor while protecting my left eye. As the pressure releases off my right eye, it may regain at least some of its function, but at least this should stop any further damage.

I've been feeling a bit worse each day as the bulging of the eye and pressure on my temple area and around the eye have increased. It's not severe pain, but it feels like a bad sinus headache or sometimes and ear infection. 

My left eye is okay, but it is definitely stressed about me using it exclusively. I didn't need glasses before this, but my left eye was a bit weaker than right eye, so reading is definitely more challenging. Also, my right eye is dominant, so even with it closed I get some ghost imaging/fog over my vision. 

I tried one eye patch, but it put too much pressure on my eye and didn't seem to help that much. I am going to try another, but I'm not very optimistic I'll find one that helps until the tumor starts to shrink and take some of the pressure off.

One good development, which also complicated how I've been feeling the last couple of days, is that I got my second dose of the Covid vaccine on Thursday. I was able to move into an assisted living facility back in October and therefore was part of a federal program to vaccinate residents and staff. I felt worse since then, but I honestly can't tell if it was vaccine related or cancer related, or a combination of both. 

Please pray that the radiation therapy is able to quickly reduce the size of the tumor to take pressure off my eye and that I might get back at least some of the function in my right eye. Thankfully, my sister, Liz, has her two week Spring Break starting Monday so my Mom would usually helps with one of my nephews hybrid learning schedule will be able to take me to treatment each day.

I'm getting a bit tired, so I think I'm going to leave it here. I'm doing okay emotionally. There's more going on, especially regarding the options for my overall cancer, but I haven't made any decisions on that yet, so that can come at another time.

As always, thanks for the many ways that you all support me with your prayers, encouraging words and generosity of time and money. It really means a lot!

PS: Please excuse any egregious typos! I am sure that my other posts have them as well, but this time I have a good excuse as to why I couldn't proofread this ;)

Update

So it's been four months since my last update. A lot has happened since then, so I'll try to go through it all quickly so you can have a sense of where things are with me.

I moved back to Maine in Mid-July to be closer to most of my family. I spent the first three months in a couple of extended stay hotels, as we explored options for more permanent housing. Maine is beautiful as always and it's been good to be closer to most of my family, but there are a lot of things that I miss about Illinois, my sister Janet, my friends and my church being on the top of that list.

About a month ago, I moved into a new apartment that fits my needs and is affordable. This was really a gift from God that I found it. A couple of weeks ago my stuff arrived from Illinois and I'm finally feeling settled in, thanks especially to my mom helping me unpack.

In September, I started an oral chemotherapy. It is one of the final FDA approved chemotherapies for metastatic rectal cancer. I was on the drug for two months. It wasn't very much fun, especially the second month as I started to vomit fairly often during the two week stretches that I would take the pills twice a day. It was less difficult, though, than the chemo regimen I had been on for the last couple of years, so I did appreciate the lack of some of the side effect that had been so bad previously.

I had a CT scan last week and met with my oncologist today to go over the results. I currently have a few large tumor in both of my lungs and they each grew somewhat larger during the last two months. That means that the chemo was not effective against the cancer. This wasn't too surprising as after many years of chemo tumors can become resistant to other drugs, and this was sort of a last line of defense option. 

The next steps are that I'm probably going to have another biopsy of the tumors. We did one in September, but they weren't able to find any usable cells for genomic testing. Unfortunately, the tests they would do to make sure that the biopsy has useful material would make testing the sample impossible. The hope is that there might be a new mutation in tumor since my last genomic profile back in 2011 that would allow me to qualify for a clinical trial. The chances are pretty low, but we're sort of out of proven options at this point. There is one other FDA approved oral chemo, but its likelihood of being effective is quite low and the side effects are often quite severe. I don't think that the cost-benefit analysis makes sense with that drug.

I'm going to meet next week with a doctor at Dana Farber Cancer Institute in Boston. I've met with him a couple of times about possible clinical trials he is working on. Until now, he's suggested sticking with the approved chemotherapies, but that once those were exhausted we could consider his immunotherapy trial. He has cautioned me both times, though, that the trial hasn't been showing definitive results yet.

I'm going to return to my oncologist in a month when hopefully he has the results the biopsy. At that point we'll discuss further options. I think the chance of finding an actionable mutation is low, but it seems worth at least exploring.

At the moment, I'm not having any major symptoms from the tumors. They aren't near my airway or any other vital structures, but they are quite large. I have had a cough for more than a year now, but it seems to be related as much to the many hernias I have from past surgeries and other gastrointestinal issues as it is to the cancer. My mobility is a bit less as the neuropathy from my radiation treatments on my spine have continued to weaken my right leg and foot. I'm especially thankful for the blessing of this apartment which makes getting around much easier.

Please pray for wisdom about what options to pursue and that the cancer continues to grow slowly in the meantime. Thank you all for your encouraging words and prayers. They mean a lot to me.

Another journey

It's been a really long time since I made a blog post. I'm sorry about that and for the fact that I probably won't be any more consistent in the future (except maybe consistent about not doing regular updates.)

The world has changed a lot in the last 8 months for everyone! The advent of the pandemic meant that I didn't get to go home this spring to visit my family as I'd hoped. That was really disappointing. It also meant that I couldn't attend Easter services at my church, which was something I was planning to take a break from treatment to do. On the other hand, I have been blessed in many ways during this time. While everyone else had to quickly adjust to staying home and interacting with family and friends through Zoom or Google Hangout, that has been my life for much of the last 3 years, so it wasn't a huge adjustment for me.

While my church couldn't hold services in person, they began live streaming services something that they hadn't done before, so I got to be "there" for a lot more services than I would have been able to during treatment in normal times. My small group always made the effort to include me "virtually" in our bi-weekly meetings, so it wasn't really an adjustment for me when we all had to attend that way. I am conscious of how hard the transition has been on so many people, so I am thankful for the small blessings.

I did six months of this most recent round of chemo (irinotecan and erbitux). This period and the 10 months I did a couple of years ago have been the most difficult chemo regimen I've had in the 12 and half years since my rectal cancer diagnosis. I was strongly considering taking a break, because the side effects were wearing me down physically and mentally. The results of my CT scan at the end of April made that decision for me as the tumors in my lungs grew despite the five rounds of chemo we did between February and April. That meant that the drugs were no longer effective.

I decided to take a month to consider my options. In terms of medical options, there are limited ones left. One option is to go back through some of the drugs that already failed and try them again. This feels really illogical to me. Perhaps there is a medical basis to hope that they might work again, but I don't think I could mentally survive 3 months of chemo that has a high likelihood will fail. Another option is a couple of oral chemos that can hold tumors steady and slow spread, but almost never reduce the size of tumors. I guess a third option is to look into a clinical trial.

I did not to start chemo again in June, because by that point I had decided to not renew my lease. As I said above, I've adjusted pretty well to the lock downs and quarantines, but being isolated and a thousand miles from most of my family seemed like an untenable thing at this point. That's especially true when the main reasons for my returning to Illinois, the possibility of teaching and the chance to attend my church in person, are both not possible in the current environment, especially when I have already compromised lungs. I'm going to miss all the people here (again), but I am thankful that I'll still be able to participate in my church, though from afar.

So that's a long way to say that I'm moving back to Maine at the end of next week. I'm going to be staying in an extended stay hotel for at least a couple of months. My family and I are exploring some options for the longer term. Thankfully, I was able to access a portion of my life insurance policy, so I have more flexibility and options than I would have otherwise.

Another bit of news is that I started another master's program at NIU. It will lead to my being licensed as a library media specialist, along with my elementary teaching license. It has both the benefit of giving me something to do with my time and the chance that I might have the option to work in a more flexible environment than the classroom for working around chemo. That's possibility is likely at least a couple of years off, but I have been enjoying the chance to learn and engage my mind again. The program is entirely online, so that has been a blessing both for me during chemo and with the pandemic.

Thank you to all of you for supporting and encouraging me over the years! It really means a lot. Thank you for your continued prayers as I move and as I make decisions about whether to start chemo again over the next month or so. My insurance won't switch over until August, so it will be at least then before I start anything new. I will try to remember to update once I've made a decision.

Round 1 complete

The first round of treatment went about as expected. This is by far the hardest treatment regimen that I've done for any extended period of time, but overall the side effects were less severe than they'd been when I stopped treatment last year. I think they'll eventually get worse, but for now I think I benefited a bit from having the break.

The GI symptoms are the part that makes it the most difficult. I had some severe diarrhea, but it didn't last as long as it has when I've done a few more treatments. However, I did have a lot cramping for almost the entire two weeks, which was unpleasant and made it risky to venture out, in case the diarrhea returned.

I was able, though, to make it to the funeral of my former principal, Bob Allison. He hired me 15 years ago and had an enormous impact on my life and my teaching. It was heartbreaking for him to pass suddenly after a battle with pancreatic cancer. It was good to see many people that I hadn't seen for a long time and to remember him with them. My prayers are with his wife and children.

Please pray for me that the side effects will not get worse this week. I have a new drug to hopefully deal with the cramping and I'm hoping that it helps. Thanks for all your prayers and encouragement over the last two weeks it's meant a lot.

Infusion

I'm home from treatment today. Mark, my brother, picked me up at 6:40 in a snowstorm and delivered me to the cancer center at 7:29 for my 7:30 appointment! My sister Janet drove out from Chicago in the storm, too. I really appreciate the effort it took both of them to navigate the first snowstorm of the year. We saw a couple of accidents on our way out this morning, so it was definitely slippery.

The infusion itself went pretty. I slept through a lot of it, which probably made Janet start to reconsider her drive out in the snow. They give me benedryl before one of the drugs and it knocks me out good for about an hour. Later, they give me some sedation during the drug that is more likely to cause nausea. They both were effective, which it didn't make me the most talkative person (unless you count snoring!)

I'm home now and feeling okay. I don't feel great, but I'm on some strong anti nausea drugs and steroids, so the nausea is usually manageable. After 2 or 3 days, the nausea usually goes away almost completely. However, around Day 3 is when I start to develop the serious and unpredictable diarrhea. It tends to get worse the more rounds I have, so it might not be as bad this time. However, the first time I ever took this drug back in 2016, I had a really bad accident, so while the duration might be shorter, the severity hasn't been less when I've resumed after long breaks.

I also am on a drug, Erbitux, that affects how epidermal cells grow. That is good for fighting the rectal cancer cells in my lungs, but it also causes a nasty and irritating rash all over my skin, along with some hair thinning and scalp sores. I except those will start appearing in the next few days, as well. I do have a medicine that helps to control it, but it's pretty harsh stuff on its own, so it's a bit of a trade off. However, some people get such a bad reaction to Erbitux that they have stop taking it so it doesn't cause permanent damage to their skin. For that reason, it's definitely worth taking the other medicine.

I'll try to post again during this two week cycle. Thankfully, I was able to have groceries delivered last night, so I am all set there. I was worried about cleaning up my car after this storm, as I'm even less steady on my feet after the sedation, but Mark cleaned the car off for me! That was a big help!

There had been 3-4 inches of snow on my car and it would
have sat there for awhile if Mark hadn't cleared it for me.

Thank you all for your words of support, those who generously supported me on the GoFundMe page that Janet set up, and for your prayers. I'm still dreading the side effects of this treatment and the cumulative damage that doing multiple treatments does to my body, mind and soul. However, I am thankful that God has put so many wonderful people in my life to support me through this.

Lamentations 3:19-26 (ESV)

¹⁹  Remember my affliction and my wanderings,

the wormwood and the gall!

²⁰  My soul continually remembers it

and is bowed down within me.

²¹  But this I call to mind,

and therefore I have hope:

²²  The steadfast love of the Lord never ceases;

his mercies never come to an end;

²³  they are new every morning;

great is your faithfulness.

²⁴  “The Lord is my portion,” says my soul,

“therefore I will hope in him.”

²⁵  The Lord is good to those who wait for him,

           to the soul who seeks him.

²⁶  It is good that one should wait quietly

           for the salvation of the Lord.

Restarting treatment

So it's been quite a while since I've posted. In July I moved back to Illinois to be closer to my church and friends. I've settled into my apartment after some issues with a water leak and the refrigerator freezing everything. It's very convenient to my church, so that part has been great. I have been able to spend some good time with friends and return to my small group as well.

On the other hand, neuropathy in my right leg from radiation treatment has restricted my mobility and just the overall deterioration of my physical condition from being out of work for two years has taken its toll, so I haven't been quite as active in getting out to see everyone as I'd hoped.

However, I did make it back to Maine a couple of times for my niece's birthday and as a spur of the moment trip a couple of weeks ago. That trip was motivated by the fact it was becoming more and more clear that I might end up back on chemotherapy treatments. The timing would mean that I might not make it back for the holidays so I decided to go at least once while I still could. It was fun to surprise my family, which is something of a tradition for me.

I've been off chemo since June of last year, because it had got to the point that I needed a break. I've never loved being on any form of chemo, but the one that I started in the summer of 2017 really did a number on me. Along with issues of nausea, skin sores, abscesses under my finger and toe nails, the real issue has been severe and unpredictable diarrhea that is caused by one of the drugs. I'd first taken that drug in a different regimen back in 2016, and after 5 rounds I chose to remove it, because it made it virtually impossible for me to trust my body. This is complicated by the after effects of some of my previous surgeries.

Last June, the tumor that had metastasized to my lungs weren't gone, but they had been shrunk some and I knew that I needed a break of at least six months. To be honest, part of me wanted (and still does) to stop the treatment permanently. In the intervening months, I've had 4 CT scans each showing growth of a few millimeters every 3-4 months, seen 3 different oncologists, including one at the Dana Farber Cancer Center in Boston, and all have suggested that I should return to treatment, eventually.

The treatment that I was on is one of the last approved treatments for metastatic rectal cancer and it was still somewhat effective (a few mm of shrinkage every 3 months or so). However, its side effects and the negative impact it had on my physical (except the cancer), mental and spiritual health made me very resistant to resuming treatment. That's why I had decided to wait until now.

Until recently, I haven't had any physical symptoms from the cancer itself all the way back to when I had proton therapy done on a recurrence on my spine in 2014. However, recently I've developed a persistent cough, which I expect is related to tumors in my lungs, though I think that hernias from my surgeries are a complicating factor as well. The most recent scan didn't show any restriction of my airways or arteries in my lungs, but they're getting large enough that my oncologist here in Illinois was concerned about waiting much longer.

Nevertheless, I have really struggled to make a decision. I recognize the risks of letting the cancer continue to grow. I've been blessed the last 12 years (in January officially) to have a relatively slow growing cancer, and to have had surgical and radiation options when things were more aggressive, but I know that doesn't mean it will always be the case. It doesn't make sense to give up completely on a treatment that still works.

However, I am very worried about how the treatments will affect me. I worry that it will help my cancer, but destroy my wellness in all other areas. I haven't really rebounded that well from the previous year of treatment that I had, so I would be starting off from an even lower level of health. Also, the reasons that I came back to Illinois, friends and church, would become much harder to be involved with on treatment. Living close to church and my small group helps, but when the side effects are the worst I don't really want to be around people. Also, the unpredictability of my body during treatment increases my anxiety exponentially when I do try to get out.

From the title of the post you have probably guessed that I am going to be resuming treatments. My first one will be Monday, November 11th. It was almost an impossible decision for me to make and I don't really have any sense of peace about it. To be honest, I'm dreading it. There are moments when I think about backing out. In the end, if I'm going to do treatment again this seems like the time to do it, but I'm not convinced it's the right decision. I worry that even if I get to take some breaks down the road, that I'll never really recover from the drain it takes on me.

So obviously, I could really use your prayers that the treatment wouldn't affect me as much as it did in the past. The oncologist in Maine had some ideas for trying to control the diarrhea, but when I mentioned it to my doctor here he seemed skeptical (and it seems to involve daily injections.) If there is some way that side effects could be lessened or at least more predictable, it would make things more manageable. The other side effects are still very frustrating and wearing, but they wouldn't leave me feeling as isolated.

My brother, Mark, is flying in next weekend from Maine, and my sister, Janet is in Chicago, so I am well covered for this first treatment. I appreciate that their immediate reaction was to make time and effort to be here for me. I am also thankful for all of you who have sent me your encouraging thoughts, supported me financially and prayed for me over the last 12 years. It means so much to me!

A decision

After a lot of debate and indecision, I've decided not to teach full-time this school year. I am not sure what will end up happening with possible treatment going forward and my body just really isn't ready for the demands of full-time teaching. While I think it is probably the best decision, I'm disappointed as I miss teaching and the people I worked with.

I've moved into my new apartment in Wheaton, with my mom's help. It's good sized, but there was a leak that appeared the second day I got here, and it took a couple of days to get them to send someone out to look at it, despite my sending multiple emails and pictures. I guess there was some kind of miscommunication on their part, but the guy did finally show up and is now investigating what appears to be a leaky pipe behind in the bathroom wall. By this point it has affected the bedroom, where I first noticed it soaking the rug, and the bathroom and kitchen where we noticed it leaking through the tiles as we walked on them in the last 12 hours or so.

Thankfully, other than a few books that got wet, because they were sitting in boxes in the bedroom closet, there hasn't been any damage to my stuff, but the delay in getting work done on it has meant that a lot more of the apartment has gotten wet. While I typed this, they discovered water in the basement and are about to pull out the toilet and open up the wall...

So it's been an eventful couple of days. As I said, I'm disappointed not to be able to return to teaching full-time. It puts additional financial strain on me to stay on disability, but more I'll miss actually doing the job and the people. I'm glad, though, to be back in Illinois to be close to my church and people I've missed.

Please pray that things will get settled with the apartment before my mom has to leave tomorrow and that I'll adjust quickly to being back here (except for the ridiculous heat wave were having; I'm not likely to ever adjust to that! Thanks as always for the way you all support me, including financially,  with your encouraging words, and in your prayers.

On the road again

I'm leaving tomorrow morning to return to Illinois after spending the last several months living near my family in Maine. It has been wonderful to be near my family and to get to spend time with my niece and nephews. I will really miss them, but I found a relatively affordable apartment in Wheaton close to my church, which I've missed along with my friends in Illinois.

I also made this decision to give myself the chance to work this school year. I recently had new CT scans done and the cancer has continued to progress somewhat. My oncologist in Maine has recommended that I resume treatment, but I am unsure about whether I want to do that or not. The treatment was very hard on me and would make it impossible for me to work at all. 

Right now the plan is that I would teach third grade at my old school, Norton Creek. I think that it would be good for me to work again in a lot of ways. I enjoy the learning involved in teaching and having some place to be on a daily basis after so long without it would be good for me. However, I am also unsure whether I will be able to teach full-time given the deterioration in my physical condition from treatments over the years and two years of being completely out of work. 

I'm planning to meet with my principal next week, before making a final decision about whether to return to teaching or apply for another leave of absence. I could definitely use your prayers for wisdom regarding this decision as I really don't know what the right choice is. I can see big pros and big cons to either choice. 

I'll try to update in the next week or two once all the decisions are made and I'm settled into my new apartment.

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.

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.