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.
Tuesday, July 7, 2020
Sunday, November 24, 2019
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.
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.
Monday, November 11, 2019
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!
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.
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.
Sunday, November 3, 2019
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!
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!
Thursday, July 18, 2019
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.
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.
Friday, July 12, 2019
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.
Subscribe to:
Posts (Atom)
Posts
