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.