Journal entry by Cait Espe —
Wow! It’s been a while since I updated. Since the last journal, detailing #5, the side effects of each chemo treatment have certainly compounded on each other and gotten progressively harder to deal with. This led to a particularly rough and dark time, and most recently two weeks ago caused a much needed week off of chemo.
The meeting with Dr J before what should have been chemo #9 two weeks ago was really overwhelming in a lot of ways. Nelson has been feeling increasingly fatigued, nauseous, bone and muscle pain, continued symptoms from his colon resection surgery and more neuropathy. He met with Dr J to ask about stopping chemo all together, since #8 was the bare minimum he had to complete, according to Dr J. So this conversation took an emotional turn at this point. Dr J said that this is Nelson’s one shot at killing this particular cancer- if this doesn’t work, there are no alternatives beside chemo literally every day for the rest of his natural life to try to slow progression but that’s it. Additionally, because of Lynch Syndrome, Nelson’s risk of developing other types of cancer when/if he beats this one has increased substantially because of this lovely gene. We left this appointment both in tears and just cried and held hands in silence the whole way home.
So what does this mean? Well.... we are going to be giant balls of anxiety and fear until his “survivorship” scan 3-5 months after chemo ends. That will tell us if there’s still evidence of cancer left in his body. Assuming there isn’t, he will continue to get scans routinely out to the 5 year mark. If there IS... I’m just not ready to let my mind go there.
With this news and his increasing physical and mental weariness, Dr J signed off on taking a week off to rest and just feel some semblance of normalcy for a second. They did this between diagnosis and his big surgery, as well, and it was SO nice. This time, Nelson was able to laugh and enjoy feeling physically better than he has in MONTHS and it helped him mentally prepare for the final push of treatments.
Today we went in for #9. They lowered his dosage by 10% to hopefully “take the edge off”, as well as an extra dose of extended release anti nausea and steroid to help combat some of the symptoms. So far, he’s feeling ok... but we know by now that the worst part comes Thursday-next week after he returns his pack.
To say we are looking forward to December and the end of this chemo is the understatement of the year!! To say we are holding our breath for that survivorship scan and I’m sure for months and years after is the understatement of my entire life.
This has been a year from Hell. But I’ve been thinking lately about the positives. I feel closer to my parents and Nelson to his and that has been one of the biggest blessings. Our bond has been tested but remains stronger than ever. Our friendships have flourished and we are focusing on investing in new and old connections that we weren’t before. We have realized how precious life and love are and each day is something to be thankful for. Bella has shown such poise and strength as she endures the hardest year of her life, as well. But I am so thankful for her two best friends who have been incredibly supportive and remind her to laugh often. We have started looking for a house, to put down roots for team Espe. We have a lot to be thankful for, in the midst of this very dark time.
As always, thank you for reading our update and supporting our family in this journey! It means more than I could ever put into words to know our connections with you go farther and deeper than we knew. Love you all and I will be updating soon. 💕
The meeting with Dr J before what should have been chemo #9 two weeks ago was really overwhelming in a lot of ways. Nelson has been feeling increasingly fatigued, nauseous, bone and muscle pain, continued symptoms from his colon resection surgery and more neuropathy. He met with Dr J to ask about stopping chemo all together, since #8 was the bare minimum he had to complete, according to Dr J. So this conversation took an emotional turn at this point. Dr J said that this is Nelson’s one shot at killing this particular cancer- if this doesn’t work, there are no alternatives beside chemo literally every day for the rest of his natural life to try to slow progression but that’s it. Additionally, because of Lynch Syndrome, Nelson’s risk of developing other types of cancer when/if he beats this one has increased substantially because of this lovely gene. We left this appointment both in tears and just cried and held hands in silence the whole way home.
So what does this mean? Well.... we are going to be giant balls of anxiety and fear until his “survivorship” scan 3-5 months after chemo ends. That will tell us if there’s still evidence of cancer left in his body. Assuming there isn’t, he will continue to get scans routinely out to the 5 year mark. If there IS... I’m just not ready to let my mind go there.
With this news and his increasing physical and mental weariness, Dr J signed off on taking a week off to rest and just feel some semblance of normalcy for a second. They did this between diagnosis and his big surgery, as well, and it was SO nice. This time, Nelson was able to laugh and enjoy feeling physically better than he has in MONTHS and it helped him mentally prepare for the final push of treatments.
Today we went in for #9. They lowered his dosage by 10% to hopefully “take the edge off”, as well as an extra dose of extended release anti nausea and steroid to help combat some of the symptoms. So far, he’s feeling ok... but we know by now that the worst part comes Thursday-next week after he returns his pack.
To say we are looking forward to December and the end of this chemo is the understatement of the year!! To say we are holding our breath for that survivorship scan and I’m sure for months and years after is the understatement of my entire life.
This has been a year from Hell. But I’ve been thinking lately about the positives. I feel closer to my parents and Nelson to his and that has been one of the biggest blessings. Our bond has been tested but remains stronger than ever. Our friendships have flourished and we are focusing on investing in new and old connections that we weren’t before. We have realized how precious life and love are and each day is something to be thankful for. Bella has shown such poise and strength as she endures the hardest year of her life, as well. But I am so thankful for her two best friends who have been incredibly supportive and remind her to laugh often. We have started looking for a house, to put down roots for team Espe. We have a lot to be thankful for, in the midst of this very dark time.
As always, thank you for reading our update and supporting our family in this journey! It means more than I could ever put into words to know our connections with you go farther and deeper than we knew. Love you all and I will be updating soon. 💕
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