Posted by Becky
Leif's B cycle chemo takes more out of him than the A cycle does. Since we got home from Brunswick on August 1st, he's needed quite a few transfusions of blood and platelets. He's been running a fever off and on for the last week, so he's on a couple of antibiotics plus acetaminophen to keep his temperature down. Naturally, this is all rather tiring and has involved a lot of time spent at the Waldo County oncology office, plus a day in the emergency room. Since his neutrophil count (indication of immune system activity) has been essentially zero, he's had to limit where he goes and who he sees, as well. Fortunately he has some projects - wiring around the house, designing some camping gear - to keep boredom at bay. And he's been taking naps. Lots of naps. He was able to forestall the worst of the rash and mouth/throat sores he got during the last B cycle recovery period, by treating them proactively. Leif is a trouper at taking his meds on time and generally taking care of himself, no matter how inconvenient or unpleasant it might be in the moment.
Since several of his doctors are on vacation, we don't have any official word on what last Friday's PET scan shows. Preliminary indications are that things are going in the right direction, so we have our fingers crossed. No matter what it shows, I believe we'll be off to Brunswick for some more chemo toward the end of next week, and will be taking a trip to Dartmouth for another preliminary meeting sometime in the next month.
One of the medications Leif has been taking is a decoction of several medicinal mushrooms and roots from Avena Botanicals -- thanks, Alicia and John! We ran it by the hospital pharmacist to check for any drug interactions before starting him on it, and she determined that not only is it safe to use with his other drugs, she thought it was a great thing for him to be taking. It's rather unpalatable (I tasted it), but he found after the first few days that it started tasting appealing. So we're pretty sure it's helping his body cope. I mix it into a little miso soup made with kombu broth, and top it with a chive or two.
Also, after decades of feeling best on a vegetarian diet with some occasional fish, he's been craving red meat. Which stands to reason, considering his current needs for protein and iron; fish, dairy, and legumes alone just weren't cutting it. He's been eating a lot of grass-fed meatloaf, lamb meatballs, and bison burgers. Cuts of meat like lamb chops or stew get caught in his teeth, and with his mouth tenderness and low platelets, flossing them out again is not ideal. So we're sticking to the ground stuff. Kasha and I are reveling in our household's sudden meat bonanza.
After the last B cycle low point, when Leif's blood counts (the levels of healthy cells made by his bone marrow - red and white blood cells, platelets) finally started to recover, they bounced back fast. Even though he's feeling pretty beat up these days, he's a strong guy whose body is working to right itself after every insult. His appetite is for good, healthy foods - meat, greens, mushrooms, nuts, vegetables, sea vegetables, etc., and he's continuing to eat well even when he's not very hungry.
I spent part of last week out of town for work, thanks to my mom and dad helping out. Since I work remotely, I enjoy getting the chance to see my co-workers, and in some cases to meet them in person for the first time. I'm glad I didn't have to miss this opportunity to do so.
It has made my day on many occasions to run into people who say they've been thinking of Leif, praying for him, etc. I feel very lucky to live in such a great community and to know so many caring people.
Leif's B cycle chemo takes more out of him than the A cycle does. Since we got home from Brunswick on August 1st, he's needed quite a few transfusions of blood and platelets. He's been running a fever off and on for the last week, so he's on a couple of antibiotics plus acetaminophen to keep his temperature down. Naturally, this is all rather tiring and has involved a lot of time spent at the Waldo County oncology office, plus a day in the emergency room. Since his neutrophil count (indication of immune system activity) has been essentially zero, he's had to limit where he goes and who he sees, as well. Fortunately he has some projects - wiring around the house, designing some camping gear - to keep boredom at bay. And he's been taking naps. Lots of naps. He was able to forestall the worst of the rash and mouth/throat sores he got during the last B cycle recovery period, by treating them proactively. Leif is a trouper at taking his meds on time and generally taking care of himself, no matter how inconvenient or unpleasant it might be in the moment.
Since several of his doctors are on vacation, we don't have any official word on what last Friday's PET scan shows. Preliminary indications are that things are going in the right direction, so we have our fingers crossed. No matter what it shows, I believe we'll be off to Brunswick for some more chemo toward the end of next week, and will be taking a trip to Dartmouth for another preliminary meeting sometime in the next month.
One of the medications Leif has been taking is a decoction of several medicinal mushrooms and roots from Avena Botanicals -- thanks, Alicia and John! We ran it by the hospital pharmacist to check for any drug interactions before starting him on it, and she determined that not only is it safe to use with his other drugs, she thought it was a great thing for him to be taking. It's rather unpalatable (I tasted it), but he found after the first few days that it started tasting appealing. So we're pretty sure it's helping his body cope. I mix it into a little miso soup made with kombu broth, and top it with a chive or two.
Also, after decades of feeling best on a vegetarian diet with some occasional fish, he's been craving red meat. Which stands to reason, considering his current needs for protein and iron; fish, dairy, and legumes alone just weren't cutting it. He's been eating a lot of grass-fed meatloaf, lamb meatballs, and bison burgers. Cuts of meat like lamb chops or stew get caught in his teeth, and with his mouth tenderness and low platelets, flossing them out again is not ideal. So we're sticking to the ground stuff. Kasha and I are reveling in our household's sudden meat bonanza.
After the last B cycle low point, when Leif's blood counts (the levels of healthy cells made by his bone marrow - red and white blood cells, platelets) finally started to recover, they bounced back fast. Even though he's feeling pretty beat up these days, he's a strong guy whose body is working to right itself after every insult. His appetite is for good, healthy foods - meat, greens, mushrooms, nuts, vegetables, sea vegetables, etc., and he's continuing to eat well even when he's not very hungry.
I spent part of last week out of town for work, thanks to my mom and dad helping out. Since I work remotely, I enjoy getting the chance to see my co-workers, and in some cases to meet them in person for the first time. I'm glad I didn't have to miss this opportunity to do so.
It has made my day on many occasions to run into people who say they've been thinking of Leif, praying for him, etc. I feel very lucky to live in such a great community and to know so many caring people.
Thanks for the update Becky!
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