I had a chest X-ray taken this morning and sent it to dr Wigle. He called to say the pneumothorax has gotten worse and he recommends doing surgery again. He was open tomorrow and we couldn't see any benefit to waiting. We were able to get things squared away around home and are leaving now for Rochester.
Sunday and today was the first I've felt any symptoms, just slight shortness of breath as I was talking or walking. But I would say effects are still mild.
Obviously we are sad to be going back in the hospital again. It's hard on us to miss so many things this week. But we just take one day at a time. It's good Leann is a spontaneous person.
Derek & Leann
Monday, July 1, 2013
Wednesday, June 26, 2013
On our way home tonight yet
We got out of ER in time to get to our appt with Dr Buckner. He showed us the MRIs and the cancer spots have grown. There is a spot on the lung that is 3/4" in size which is alittle larger than april. The brainstem and spine also show growth of cancer in a few areas. Nothing that warrants immediate attention but its not good news either. His plan is to see what changes from today forward 6-8 weeks. The reality is that a large portion of this time I was on nothing as have only been on Zolinza for 2 weeks. I haven't felt any side effects to the Zolinza as of yet.
Thanks for your prayers. I would just summarize this visit by saying its a reminder to take one day at a time.
Derek & Leann
Thanks for your prayers. I would just summarize this visit by saying its a reminder to take one day at a time.
Derek & Leann
Released from ER
Dr. Wigle (thoracic surgeon) released us from the ER. He is saying that because Derek is not having symptoms like shortness of breath or chest pain, he would not do anything at this time with the pneumothorax. He didn't know if the pneumothorax was getting better or getting worse with just a one-time snapshot. The upper lobe is still fully inflated, but the partial collapse of the lower lobe is what showed up on the CT. Derek's case is unique, because most people don't walk around with a pneumothorax of this size. Dr. Wigle doesn't want to jump into a surgery or another chest tube without Derek showing obvious signs of distress because of everything he has been through with his lungs.
We are to follow-up with a chest x-ray on Monday, July 1, at home. Thanks for all of your prayers! We'll keep you posted. Right now, we are in the waiting room of Dr. Buckner (medical oncologist) awaiting results of yesterday and today's MRIs of brain and spine.
We are to follow-up with a chest x-ray on Monday, July 1, at home. Thanks for all of your prayers! We'll keep you posted. Right now, we are in the waiting room of Dr. Buckner (medical oncologist) awaiting results of yesterday and today's MRIs of brain and spine.
Saturday, June 15, 2013
Starting Zolinza
Lot's been going on in the last couple weeks. I finally started on a new chemo drug on Thursday. It took a while to sort things out and I had some blood work to do before I could start. So far I have not gotten sick from it but I did not feel as energetic today. The last couple weeks I have been feeling a little better and getting up earlier in the morning. We hope that continues and this new med doesn't change that.
Last weekend we went to Indiana for the visitation and funeral of a friend who had cancer and two young kids. We were both glad we went, as it was overall encouraging to us. You probably think I'm nuts but it seemed more like a celebration of victory than a sad observance of death. I think when it's a believer and we have had time to say our goodbyes, we can look at it more that way. We met a number of people who we had never met before but knew of us because they had been praying for us.
This weekend we are in Kansas visiting friends. The week after next we go to mayos again for routine scans and followup.
Thanks for your continued prayers.
Derek and Leann
Last weekend we went to Indiana for the visitation and funeral of a friend who had cancer and two young kids. We were both glad we went, as it was overall encouraging to us. You probably think I'm nuts but it seemed more like a celebration of victory than a sad observance of death. I think when it's a believer and we have had time to say our goodbyes, we can look at it more that way. We met a number of people who we had never met before but knew of us because they had been praying for us.
This weekend we are in Kansas visiting friends. The week after next we go to mayos again for routine scans and followup.
Thanks for your continued prayers.
Derek and Leann
Saturday, June 1, 2013
May update
The month of May went pretty good and flew by. The feeding tube is working well and I've gained some weight. People around me say I continue to look better. I am feeling a little bit more energetic, and don't nap as much. The next challenge is to get out of bed sooner. I have continued going in to work in the afternoons.
We just got back from a week on the east coast. We took the train out to Connecticut for my cousin's wedding on Memorial Day. The train was a good experience for the kids. We were in a family sleeper from Chicago to D.C. They had lots of fun playing on the bunks up high. Leann compared it to camping. We took the train because I wasn't comfortable flying yet. My lungs have been doing good the last month or two. We also spent the weekend in Rockville and left the kids with Leann's cousin while we went to the wedding. It was good to have a couple nights just as a couple. I'm glad we made the trip.
On the medical front, the genetic testing that Mayo's did showed some genetic mutation and leads them to a certain drug as the next step. They are currently fighting this out with insurance and we are just waiting. I'm not too anxious to start another drug as I'm enjoying the chance to recuperate. So for the moment I am not doing any chemo.
Thanks to all who have helped us in various ways. Thanks for all your love and prayers!
Derek & Leann
What I'm Learning From Cancer #14
Appreciate your wife & children more – It’s amazing how when it looks like you are coming to the end of your life, it’s much easier to forgive minor faults and be thankful for the big things.
I know this one is short but it really doesn't require a lot of explanation. Just be forgiving and kind to those around you and you'll surprised how well things go.
We just got back from a week on the east coast. We took the train out to Connecticut for my cousin's wedding on Memorial Day. The train was a good experience for the kids. We were in a family sleeper from Chicago to D.C. They had lots of fun playing on the bunks up high. Leann compared it to camping. We took the train because I wasn't comfortable flying yet. My lungs have been doing good the last month or two. We also spent the weekend in Rockville and left the kids with Leann's cousin while we went to the wedding. It was good to have a couple nights just as a couple. I'm glad we made the trip.
On the medical front, the genetic testing that Mayo's did showed some genetic mutation and leads them to a certain drug as the next step. They are currently fighting this out with insurance and we are just waiting. I'm not too anxious to start another drug as I'm enjoying the chance to recuperate. So for the moment I am not doing any chemo.
Thanks to all who have helped us in various ways. Thanks for all your love and prayers!
Derek & Leann
What I'm Learning From Cancer #14
Appreciate your wife & children more – It’s amazing how when it looks like you are coming to the end of your life, it’s much easier to forgive minor faults and be thankful for the big things.
I know this one is short but it really doesn't require a lot of explanation. Just be forgiving and kind to those around you and you'll surprised how well things go.
Saturday, May 4, 2013
Back to "Normal"
So we are getting used to a new normal I think. I started driving to work this week, so that means it will be easier to do the same schedule all the time. Last week Leann took me in or I got rides, and that meant a lot more randomness. It still seems like there are enough Dr. appts but at least at work things feel pretty normal. We've got a lot of help around home since I can do little to help with the chores. I pretty much sit in my chair, do PT exercises, or take a nap. The feeding tube is helping out a lot. As we expected it has taken the pressure off of meal times. I can basically feed myself any way I want. If a meal looks good, I can eat as much as I want by mouth. Then I feed myself a can of formula through the tube. My sister in law is working on some formulas for more healthy home made stuff that I can put through the tube. I've noticed that it doesn't leave me as groggy and over full as the Rx formula.
No word yet on the start of chemo. We'll call Mayo's next week and see what they've learned. I think in the next week or so the chest tube sites will be more healed. Right now they are still a little sore. The stomach tube has healed enough it doesn't hurt to laugh or cough anymore.
Thanks so much to those of you who have helped us out in any way, even if it is daily prayer. I'm continuously amazed by how many people tell me they pray for us every day.
Love,
Derek & Leann
What I'm Learning From Cancer #13 (written originally last year when I still could do more physically)
Know what’s important, then do it – It makes you think about what is important and what is not. The hard part is then doing it. Laying in a hospital bed and realizing that you will most likely not see your kids grow up has a way of changing your perspective. For me it helped me to think about what are the most important things to be spending my time on. I realized that I had to make the most of every opportunity to spend time with my children. I want to teach them as much about character and life skills as possible while I’m here. I realize that I cannot ensure they “turn out”, I have to leave that to God, but while I have time I want to make as much difference in their lives as possible. It’s still hard though some times as things like work and taking care of the house can pull at our time. But I just try to focus on involving the kids in as much as possible, and try to spend time reading to them from the Bible or good books that hopefully they will learn from. So the first step is deciding what is important to us, and then the second is actually doing it. The second step is harder than the first I think. Every few weeks it seems like Leann is asking me – are you doing what you wanted to with your time? It’s good she asks me that. There are times when I kind of have to make adjustments again. But overall this effort is what makes life more enjoyable anyway! If we’ve decided something is important to do, it’s rewarding when we actually get it done. So I encourage each of you to think about what’s most important to you and then how you will actually get it done.
No word yet on the start of chemo. We'll call Mayo's next week and see what they've learned. I think in the next week or so the chest tube sites will be more healed. Right now they are still a little sore. The stomach tube has healed enough it doesn't hurt to laugh or cough anymore.
Thanks so much to those of you who have helped us out in any way, even if it is daily prayer. I'm continuously amazed by how many people tell me they pray for us every day.
Love,
Derek & Leann
What I'm Learning From Cancer #13 (written originally last year when I still could do more physically)
Know what’s important, then do it – It makes you think about what is important and what is not. The hard part is then doing it. Laying in a hospital bed and realizing that you will most likely not see your kids grow up has a way of changing your perspective. For me it helped me to think about what are the most important things to be spending my time on. I realized that I had to make the most of every opportunity to spend time with my children. I want to teach them as much about character and life skills as possible while I’m here. I realize that I cannot ensure they “turn out”, I have to leave that to God, but while I have time I want to make as much difference in their lives as possible. It’s still hard though some times as things like work and taking care of the house can pull at our time. But I just try to focus on involving the kids in as much as possible, and try to spend time reading to them from the Bible or good books that hopefully they will learn from. So the first step is deciding what is important to us, and then the second is actually doing it. The second step is harder than the first I think. Every few weeks it seems like Leann is asking me – are you doing what you wanted to with your time? It’s good she asks me that. There are times when I kind of have to make adjustments again. But overall this effort is what makes life more enjoyable anyway! If we’ve decided something is important to do, it’s rewarding when we actually get it done. So I encourage each of you to think about what’s most important to you and then how you will actually get it done.
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