Journal entry by Kiran Rana —
The headline says it all : I am no longer sucking on lidocaine, I can talk pretty much like I used to, and I am on the way to eating what I want and as much of it as I need (and sometimes more).
For a while there I was desperate with pain. I was asking the doctors every day to do something, please. So Oncology asked the Head & Neck department to get involved and they decided to do a biopsy (they temporarily numb you, locally, then take a small Exacto-like knife blade and cut little pieces of flesh out of your mouth…. literally). Under the broad name of mucositis, they said it could be bacteria-, virus-, fungus-related, it could be an autoimmune issue, it could be a reappearance of the lymphoma, it could be none of these. They ruled out the bacteria/virus/fungus thing within a day. For a week we were on edge wondering if it could be the lymphoma reappearing. After 8-9 days they said, We can’t say what it is for sure but we’re pretty sure it isn’t the lymphoma, we might need more flesh to study this further. We were hugely relieved about the cancer, I ignored the suggestion about contributing more flesh.
Around the 1st of March I decided to put out an appeal on Facebook … I described what was happening, how bad the pain was, and asked people who had any REAL similar experience to tell me what they used to help themselves. I got some good suggestions. I asked my acupuncturist for suggestions. My oncologist also suggested a course of bone-marrow-building injections to invigorate my white blood cells. I took a bunch of the recommendations and chose a mix of them and started “doing” them. Within a week I was better! The lesions on my tongue were calming down, I only woke up three times at night to apply lidocaine, the days were bearable! For 2-3 days things were great, then they seemed to stop working. Oh no, we thought. But something said, Stay the course. And sure enough, after another couple days I could tell there was real improvement. And there is, and it is wonderful.
So now I’m focusing on Chinese herbal medicine and some acupuncture (Zoom acupuncture, done from home!) to stabilize and strengthen. And feeling amazing, and praying it doesn’t return. Because they say it can. This mucositis thing is not unknown, and happens to people who have had chemo or radiation, and can be miserable and you can never be sure what will work. They say, the moment you feel it starting again, do something!
The amazing thing is, the body doesn’t remember pain. I know I spent nights waking up every hour to apply lidocaine, and today — less than a week later — I can’t remember what that felt like. I know it happened, and it was very, very hard, but the actual pain memory: gone.
Another piece of good news, really good news. Last week I had a PET scan to see if there was cancer still active in my body. There isn’t, anywhere. The chemo treatment has done its work, my scan was completely clear.
I hope your lives are being good to you — and you to them.
For a while there I was desperate with pain. I was asking the doctors every day to do something, please. So Oncology asked the Head & Neck department to get involved and they decided to do a biopsy (they temporarily numb you, locally, then take a small Exacto-like knife blade and cut little pieces of flesh out of your mouth…. literally). Under the broad name of mucositis, they said it could be bacteria-, virus-, fungus-related, it could be an autoimmune issue, it could be a reappearance of the lymphoma, it could be none of these. They ruled out the bacteria/virus/fungus thing within a day. For a week we were on edge wondering if it could be the lymphoma reappearing. After 8-9 days they said, We can’t say what it is for sure but we’re pretty sure it isn’t the lymphoma, we might need more flesh to study this further. We were hugely relieved about the cancer, I ignored the suggestion about contributing more flesh.
Around the 1st of March I decided to put out an appeal on Facebook … I described what was happening, how bad the pain was, and asked people who had any REAL similar experience to tell me what they used to help themselves. I got some good suggestions. I asked my acupuncturist for suggestions. My oncologist also suggested a course of bone-marrow-building injections to invigorate my white blood cells. I took a bunch of the recommendations and chose a mix of them and started “doing” them. Within a week I was better! The lesions on my tongue were calming down, I only woke up three times at night to apply lidocaine, the days were bearable! For 2-3 days things were great, then they seemed to stop working. Oh no, we thought. But something said, Stay the course. And sure enough, after another couple days I could tell there was real improvement. And there is, and it is wonderful.
So now I’m focusing on Chinese herbal medicine and some acupuncture (Zoom acupuncture, done from home!) to stabilize and strengthen. And feeling amazing, and praying it doesn’t return. Because they say it can. This mucositis thing is not unknown, and happens to people who have had chemo or radiation, and can be miserable and you can never be sure what will work. They say, the moment you feel it starting again, do something!
The amazing thing is, the body doesn’t remember pain. I know I spent nights waking up every hour to apply lidocaine, and today — less than a week later — I can’t remember what that felt like. I know it happened, and it was very, very hard, but the actual pain memory: gone.
Another piece of good news, really good news. Last week I had a PET scan to see if there was cancer still active in my body. There isn’t, anywhere. The chemo treatment has done its work, my scan was completely clear.
I hope your lives are being good to you — and you to them.
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