We came up to mayos the last couple days since they wanted to followup with my pneumonia and I have had more back pain. I had a complete set of scans yesterday and this morning. We met with the doctors this afternoon. The scans show the upper back tumor has grown a little. This is consistent with the pain i have had. Their basic conclusion is that I can increase the pain med if needed. As for the pazoponib I am on, they were ready to give up on that. We convinced them that I stay on that for the time being since my symptoms only increased during the time I was off it. This was the hospitalization and a few days afterwards. They want me to do an octreoscan to see if i am a candidate for a certain type of drug. this test looks for somatostatin on the surface of the tumor. i wasnt able to get that test this same trip but will do it next time i am up. Dr Buckner is going to look into a couple other drugs in regards to the genetic testing I did last year.
I am not surprised by what the scans showed, but it is discouraging nonetheless. Thanks for your prayers over the past weeks. As for future prayers, just pray that the pazoponib can work and my pain is controlled. Otherwise, I have been feeling good, my brain has been working,eating is going better for the most part. I have lots of reasons to be thankful.
Love,
Derek and Leann
Tuesday, January 28, 2014
Thursday, January 9, 2014
Back to work
Yesterday, Derek went back to work with vigor. He's excited about stuff again, which is wonderful to see. The Hemoglobin was back up to 10 on Monday, so we restarted the chemo. He was off of the chemo a total of 10 days because of the aspiration pneumonia. While he was in the hospital, he was put on a "stress-dose" of steroids which was 10x the amount he was on at home. I'm questioning whether this was needful, as it is VERY hard coming off. TONS of pain! He has had to go back on the narcotic pain meds which in turn make other (pee/poo) problems. It just doesn't seem like it was worth whatever the benefit they expected him to get from it while at the hospital. Each day is getting a little better though.
Derek doesn't want me to say much about this, but I want to spare any of my friends any difficulty I can. He plans to go through the proper channels to notify OSF of the mistaken advertising, but I will tell you the bottom line: OSF is not "working with" Mayo Clinic, even though their billboard, elevator signs, and on-hold voice messages say so. I have so much trouble getting test results between OSF and Mayo's. It is probably their goal to make this happen seamlessly in the near future, but as the patient/caregiver, we still have to be the ones to get the results ordered, pick them up ourselves, and mail them at the post office to the right person. When the doctors say they will be in contact with our Mayo doctors, it doesn't happen for days. However, I will also emphasize that we greatly appreciate the experience we had at the ER at OSF: Immediate, efficient help for our needs.
On to the kiddos... we have decided to have them attend a private school about 15 minutes drive south of us. Today was their second day, and although they were quite nervous the first day, it went well. I still may have some teaching in the afternoons if there is any catching up to do. They will be on a half-day schedule for awhile to see how the transition goes, so I drop them off at 8:30am and pick up at noon. I have some mixed feelings about it, but mostly feel relieved that I have less responsibility in 2014.
On another note, I want to express my heartfelt thanks for all of you who helped out in the many, many ways we needed you in 2013. Early in the year, we had Derek's lung collapses and many filled in with teaching responsibilities and household chores. Some drove us to appts or sat with us in hospital rooms. In July, we had the lung surgery. We appreciated the many visitors and babysitters. I even had a few that stayed nights at our house from time to time over the year. Never knowing what our needs may be, it's often difficult to communicate them, especially in advance. Our church has been a wonderful and uplifting source of comfort, and finally and most of all, our Jesus and our Father in Heaven who has sustained us and been the lifter up of our heads. Praise be to Him! We keep trusting his almighty Presence for each new day and are thankful for His mercy and grace to help us through the suffering we have been called to walk. Many times, it is joy just turned sideways a little. I've thoroughly enjoyed many long hours with Derek, at his bedside or sitting in front of the fire, serving him while he encourages me. It's beautiful. We love you and pray for the many others who are grieving, broken-hearted, missing loved ones, or enduring hardships. There are a lot of troubles worse than living with cancer.
Leann & Derek
Derek doesn't want me to say much about this, but I want to spare any of my friends any difficulty I can. He plans to go through the proper channels to notify OSF of the mistaken advertising, but I will tell you the bottom line: OSF is not "working with" Mayo Clinic, even though their billboard, elevator signs, and on-hold voice messages say so. I have so much trouble getting test results between OSF and Mayo's. It is probably their goal to make this happen seamlessly in the near future, but as the patient/caregiver, we still have to be the ones to get the results ordered, pick them up ourselves, and mail them at the post office to the right person. When the doctors say they will be in contact with our Mayo doctors, it doesn't happen for days. However, I will also emphasize that we greatly appreciate the experience we had at the ER at OSF: Immediate, efficient help for our needs.
On to the kiddos... we have decided to have them attend a private school about 15 minutes drive south of us. Today was their second day, and although they were quite nervous the first day, it went well. I still may have some teaching in the afternoons if there is any catching up to do. They will be on a half-day schedule for awhile to see how the transition goes, so I drop them off at 8:30am and pick up at noon. I have some mixed feelings about it, but mostly feel relieved that I have less responsibility in 2014.
On another note, I want to express my heartfelt thanks for all of you who helped out in the many, many ways we needed you in 2013. Early in the year, we had Derek's lung collapses and many filled in with teaching responsibilities and household chores. Some drove us to appts or sat with us in hospital rooms. In July, we had the lung surgery. We appreciated the many visitors and babysitters. I even had a few that stayed nights at our house from time to time over the year. Never knowing what our needs may be, it's often difficult to communicate them, especially in advance. Our church has been a wonderful and uplifting source of comfort, and finally and most of all, our Jesus and our Father in Heaven who has sustained us and been the lifter up of our heads. Praise be to Him! We keep trusting his almighty Presence for each new day and are thankful for His mercy and grace to help us through the suffering we have been called to walk. Many times, it is joy just turned sideways a little. I've thoroughly enjoyed many long hours with Derek, at his bedside or sitting in front of the fire, serving him while he encourages me. It's beautiful. We love you and pray for the many others who are grieving, broken-hearted, missing loved ones, or enduring hardships. There are a lot of troubles worse than living with cancer.
Leann & Derek
Friday, January 3, 2014
Home Update
We finally got out of the hospital on New Years Eve. I think it would have been easier to break out of jail. (I'm exaggerating a little but not too much) Sorry for not updating then but I never got to it. New Years Day was spent at M&D Sauders having our Christmas. The last two days I have slept in and then done some work via laptop from home. Recovery has not been as fast as I'd like. I am less winded but still feel some efffects. I have been waking up with headaches so it is taking me a bit to get going. No big plans around here for the weekend.
Love,
Derek & Leann
Love,
Derek & Leann
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