Journal entry by Katelyn Kinzer —
Hi All,
Continued thanks to you all for your continued prayers and many generosities expressed to us and for us as we continue to walk the path of recovery. By everything medically measurable, progress seems to be going well. Our only disappointment at this stage is that when I had the seizure, one of the meds they prescribed was the anti-seizure drug, Keppra. They said I would need to be on it for 3 to 6 months and would not be able to drive for 3 months etc. From the beginning, however, we have been talking about & anticipating being able to get off Keppra. Since everything had been going so well and I had begun driving again (Oh Happy Day. . . for both of us! smile) with no adverse effects, etc, when we recently went to a follow up appointment about 3 weeks ago, we anticipated we would be discussing the weaning off process for the Keppra. Unfortunately, the Neuro Oncologist Doc said, “I really don’t want you to stop taking Keppra”. Because of the size of your tumor that was removed, you are at a greater risk for more seizures, we have no way of knowing how much damage the extreme swelling in the brain did to surrounding tissue,(Deb seems to think she knows how much damage was done) and Keppra is the best of the anti-seizure meds in terms of not having problems and side effects, blah, blah. I had not really paid attention to the potential side effects of the medication because I had to be on it and would be getting off of it as soon as it was medically advisable which I thought would be 5 or 6 months. After the meeting I came home and looked up the side effects and under “common" was the following list: aggressive or angry, anxiety, change in personality (an effect Deb was/is hoping for) chills, cough or hoarseness, crying, depersonalization, diarrhea, dry mouth, euphoria, fever, general feeling of discomfort, headache, hyper ventilation,(only when I see Deb in the shower) irregular heartbeats (refer to shower) irritability joint pain, loss of appetite (one we haven’t noticed?), lower back or side pain, mental depression, muscle aches and pains, nausea, painful or difficult urination, paranoia, quick to react or overreact emotionally, rapidly changing moods, restlessness, shaking, shivering, shortness of breath, sleepiness or unusual drowsiness, soar throat, stuffy or runny nose, sweaty, trouble sleeping, unusual tiredness or weakness, vomiting.
After reading this list, I can’t understand how they can keep it in stock or why there isn’t a bigger problem with the mob trying to get into illegal distribution.
For my birthday some of our kids bought me a smartwatch that measures your steps each day, sleep etc. I thought I would like it, but the first day I used it as I was getting into bed a voice said, “Hey Chubby, what are you doing?” You still have 2000 more steps." I was able to get a refund and put the $ toward a gift card I can use at "Baker’s Square”.
In June I was able to drive 2846 miles to Durango, CO and back for a granddaughter’s wedding. It went well and neither Deb nor I seemed to miss the smell of hot brakes or burning rubber. Actually Deb is a good driver, Maybe better than me——especially at speed over short distances (but she has had so much more practice——smile.)
But what I really want to say is that we are very thankful for all of your many generosities to us, for the skill of medical staff, for the positive progress. Improvement of strength and energy.
Best,
Steve
Deb recently received a call from a friend saying “Hey, how is it going? We haven’t seen a post for awhile” So here it is:
Continued thanks to you all for your continued prayers and many generosities expressed to us and for us as we continue to walk the path of recovery. By everything medically measurable, progress seems to be going well. Our only disappointment at this stage is that when I had the seizure, one of the meds they prescribed was the anti-seizure drug, Keppra. They said I would need to be on it for 3 to 6 months and would not be able to drive for 3 months etc. From the beginning, however, we have been talking about & anticipating being able to get off Keppra. Since everything had been going so well and I had begun driving again (Oh Happy Day. . . for both of us! smile) with no adverse effects, etc, when we recently went to a follow up appointment about 3 weeks ago, we anticipated we would be discussing the weaning off process for the Keppra. Unfortunately, the Neuro Oncologist Doc said, “I really don’t want you to stop taking Keppra”. Because of the size of your tumor that was removed, you are at a greater risk for more seizures, we have no way of knowing how much damage the extreme swelling in the brain did to surrounding tissue,(Deb seems to think she knows how much damage was done) and Keppra is the best of the anti-seizure meds in terms of not having problems and side effects, blah, blah. I had not really paid attention to the potential side effects of the medication because I had to be on it and would be getting off of it as soon as it was medically advisable which I thought would be 5 or 6 months. After the meeting I came home and looked up the side effects and under “common" was the following list: aggressive or angry, anxiety, change in personality (an effect Deb was/is hoping for) chills, cough or hoarseness, crying, depersonalization, diarrhea, dry mouth, euphoria, fever, general feeling of discomfort, headache, hyper ventilation,(only when I see Deb in the shower) irregular heartbeats (refer to shower) irritability joint pain, loss of appetite (one we haven’t noticed?), lower back or side pain, mental depression, muscle aches and pains, nausea, painful or difficult urination, paranoia, quick to react or overreact emotionally, rapidly changing moods, restlessness, shaking, shivering, shortness of breath, sleepiness or unusual drowsiness, soar throat, stuffy or runny nose, sweaty, trouble sleeping, unusual tiredness or weakness, vomiting.
After reading this list, I can’t understand how they can keep it in stock or why there isn’t a bigger problem with the mob trying to get into illegal distribution.
I told the Doc that based on what the plastic surgeon had told me when he was working on the melanoma, I was hoping to be interviewed by “Tight Skin Senior Monthly” and maybe be on the cover or have a monthly column and I felt like these side effects would really hurt my chances. His response was very caring and comforting——apparently he thought I may be starting a seizure, and he raised the dosage.
For my birthday some of our kids bought me a smartwatch that measures your steps each day, sleep etc. I thought I would like it, but the first day I used it as I was getting into bed a voice said, “Hey Chubby, what are you doing?” You still have 2000 more steps." I was able to get a refund and put the $ toward a gift card I can use at "Baker’s Square”.
But chubby or not, some of it has been great. I have beautiful younger women coming up and saying hi, how are you, hugging me and saying you look great——It happened just last week in a restaurant and it never happened before I had a tumor.
In June I was able to drive 2846 miles to Durango, CO and back for a granddaughter’s wedding. It went well and neither Deb nor I seemed to miss the smell of hot brakes or burning rubber. Actually Deb is a good driver, Maybe better than me——especially at speed over short distances (but she has had so much more practice——smile.)
But what I really want to say is that we are very thankful for all of your many generosities to us, for the skill of medical staff, for the positive progress. Improvement of strength and energy.
Best,
Steve
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