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.
Sunday, November 24, 2019
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!
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