In the last post, Mark indicated that he had gone to 45 mg. of Prednisone a day. Unfortunately, it didn't go well. His digestive tract was still being attacked by his immune system. When he went back to 50 mg, he was okay. But, he needs to get off of these steroids! Dr. Urba ordered an infusion of infliximab, brand name Remicade, to reduce inflammation in the bowels. Wednesday, the 8th, Mark had the infusion and so far, it seems to be working. He is now at 40 mg./day and doing well. We hope that he will continue going down 5 mg. every 3-5 days.
Besides causing major fatigue, another side effect of Prednisone is changes in the shape or location of body fat, especially in the neck and abdomen. He's not particularly fond of his thick neck and belly, but hey, it could be much worse! :)
Good news, we have a new grandson! Mark Daniel Hornibrook was born on the 8th of January (his mother's birthday), the 8th child of Michael & Heather, at 8:05 am, weighting 8 lbs. almost 8 oz. He is our 18th grandchild. How's that for stats?!!
Thursday, January 16, 2020
Friday, January 3, 2020
Gradual Progress Continues...
The daily dose of Prednisone has gradually dropped to 45 mg. a day (which is still considered a high dose). The goal is to get to 10 mg or less, then transition to hydro-cortisone which will be for maintenance as my body will no longer produce needed cortisol. While on this high dose of steroids I have been very fatigued, and can only do so much in a day before I entirely tire out. One to three naps a day has become my new normal -- and that is highly unusual for me! If I am standing or moving I am wearing down, if I sit I can maintain, and if I am laying down I am regenerating. Occasionally, there is some nausea, which usually goes away with eating or resting.
Today we meet with Dr. Sarah Hopkins, an endocrinologist. She, too, is anxious to get me off of the high dose Prednisone but recognizes the need to control the immune system attacks on my organs. One of the nurses taught us how to administer emergency steroids, if I ever can't keep the pills down or if my body needs more due to trauma. Evidently, the body needs a certain amount all the time or it will fail. She taught us how to fill the syringe and then just stab the needle into the leg or arm, push in the steroid and pull it out. I am sure that will be fun, if I ever need it:-). So now, when we travel we always need to carry a syringe, small vial of steroids and a note explaining to security personal why we are carrying them.
Isn't life fun;-). We are so glad to be here and soon will be celebrating our eighth year together after the initial cancer diagnosis of less than a year to live (in reality the doctor thought 3 months). We have been so blessed and are grateful every day, for another day together.
Thank you for your love, prayers and good thoughts.
Today we meet with Dr. Sarah Hopkins, an endocrinologist. She, too, is anxious to get me off of the high dose Prednisone but recognizes the need to control the immune system attacks on my organs. One of the nurses taught us how to administer emergency steroids, if I ever can't keep the pills down or if my body needs more due to trauma. Evidently, the body needs a certain amount all the time or it will fail. She taught us how to fill the syringe and then just stab the needle into the leg or arm, push in the steroid and pull it out. I am sure that will be fun, if I ever need it:-). So now, when we travel we always need to carry a syringe, small vial of steroids and a note explaining to security personal why we are carrying them.
Isn't life fun;-). We are so glad to be here and soon will be celebrating our eighth year together after the initial cancer diagnosis of less than a year to live (in reality the doctor thought 3 months). We have been so blessed and are grateful every day, for another day together.
Thank you for your love, prayers and good thoughts.
Wednesday, December 11, 2019
Gradual Progress
On Wednesday, December 4th, the blood draw analysis showed an elevation in liver enzymes. The immunotherapy caused inflammation in the liver, along with the digestive tract and pituitary gland, as well as his skin (but the rashes are easily controlled with cremes.) Wow, it is really doing a number on Mark!
Monday, December 9, we got to see Dr. Urba which is always a treat. He is starting the gradual decrease in Prednisone from 80 mg to 75 mg a day. As long as Mark handles it well he will go down 5 mg every 5 days. Side effects of Prednisone are not all that great, either. He hasn't been able to sleep very well and it may be causing leg weakness.
Overall, Mark is improving. The digestive tract and pituitary gland are both almost back to normal. He has no nausea, diarrhea or dizziness and only occasional mild headaches. His thyroid function seems be be improving with a moderate dose of Levoxyl. His liver enzymes are also working their way back to normal.
Mark keeps thinking that he should have more energy, but it is taking time to regain his strength. We spend most of our time either at home or going to doctor appointments, but we thoroughly enjoy our time together!
We appreciate the many blessings we have and find great joy in focusing on the real meaning of Christmas.
Monday, December 9, we got to see Dr. Urba which is always a treat. He is starting the gradual decrease in Prednisone from 80 mg to 75 mg a day. As long as Mark handles it well he will go down 5 mg every 5 days. Side effects of Prednisone are not all that great, either. He hasn't been able to sleep very well and it may be causing leg weakness.
Overall, Mark is improving. The digestive tract and pituitary gland are both almost back to normal. He has no nausea, diarrhea or dizziness and only occasional mild headaches. His thyroid function seems be be improving with a moderate dose of Levoxyl. His liver enzymes are also working their way back to normal.
Mark keeps thinking that he should have more energy, but it is taking time to regain his strength. We spend most of our time either at home or going to doctor appointments, but we thoroughly enjoy our time together!
We appreciate the many blessings we have and find great joy in focusing on the real meaning of Christmas.
Monday, December 2, 2019
Back Home and Loving It
I got to spend Thanksgiving in the Hospital. However, I had wonderful care, some delicious Thanksgiving food (the first real food in days), and a delightful wife that takes such good care of me, even when I don't look, smell, nor feel my best.
Seriously, the hospital staff at Providence Portland was outstanding! They were caring, knowledgeable, responsive, and respectful. I had a comfortable bed, and they set up one for Ane, too, even bringing in a nice foam mattress for her. Our last night there, they even let us sleep from about 10 pm to 6 am - amazing!! It took a little bit to figure out what was happening in my body and how to fix it, but they got it.
Our children have also been incredibly supportive. They provided the Thanksgiving meal, brought in our Christmas decorations from the shed (a big deal), had a fun time here, and cleaned up afterward. Our grandchildren have also been so sweet and helpful. What a wonderful family!
We got to come home last Friday and have so enjoyed being here. Ane has worked hard to get the house Christmas ready, and how delightful it is. We love this Season of Giving, Sharing, Loving, Hope, and Joy. We all have our challenges in life, and this season is not clear of those either, but it is a time to reflect on the hope that is within us and be the most caring and sharing we can be.
Love and Gratitude fill our hearts, and we hope yours, too.
Seriously, the hospital staff at Providence Portland was outstanding! They were caring, knowledgeable, responsive, and respectful. I had a comfortable bed, and they set up one for Ane, too, even bringing in a nice foam mattress for her. Our last night there, they even let us sleep from about 10 pm to 6 am - amazing!! It took a little bit to figure out what was happening in my body and how to fix it, but they got it.
Our children have also been incredibly supportive. They provided the Thanksgiving meal, brought in our Christmas decorations from the shed (a big deal), had a fun time here, and cleaned up afterward. Our grandchildren have also been so sweet and helpful. What a wonderful family!
We got to come home last Friday and have so enjoyed being here. Ane has worked hard to get the house Christmas ready, and how delightful it is. We love this Season of Giving, Sharing, Loving, Hope, and Joy. We all have our challenges in life, and this season is not clear of those either, but it is a time to reflect on the hope that is within us and be the most caring and sharing we can be.
Love and Gratitude fill our hearts, and we hope yours, too.
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