As we prepare for bed, psalm 43, and verse 5 says "why art thou cast down, O my soul? And why art thou disquieted within me? Hope in God: for I shall yet praise Him, who is the health of my countenance, and my God."
Today's report was that the lung did not stay inflated but collapsed again (pneumothorax) when the suction was removed from the chest tube. So, the suction was turned back on and we wait...the progression we are hoping for is:
1. 24 hours must go by on the suction before retrying
2. Chest X-ray to see lung looks good.
3. Suction is turned off and wet seal turned on.
4. 24 hours of wet seal to see lung hold to chest wall.
5. Another chest X-ray to see lung stayed inflated.
6. clamp the tube to simulate removing it.
7. Wait a few hours to see lung hold.
8. remove tube.
9. Monitor after tube is removed.
If at any point the lung does not inflate/stay inflated, this will have been the second trial, and we would proceed to meet with surgeon to discuss talc being used to "stick" the lung to the chest wall. This surgery is considered fairly small and is done using a scope.
So, I think that brings you up to speed. Thank you again and again for your prayers and love.
Leann
Tuesday, March 5, 2013
Monday, March 4, 2013
Monday update from Osf
Thanks everyone for holding us up in prayer. I'm sitting up in the chair right now but it wasn't easy getting here. I still have a lot of pain when I try to hold any weight on my left arm. I've spent mostofmytime here laying in bed and trying to sleep between all the drs and visitors. It sometimes hurts to talk so I'm not always real talkative but enjoy visitors anyway.
The pulmonologist is the main dr in charge of my care. At least we found out today the Hawaii trip is off for now. She said I have to wait 6 weeks before flying. Leann and I are doing pretty good with this news since we are realizing this will be a bit of recovery and we didn't want to take a chance and end up in the hospital there. They have been taking X-rays every day and my lung is expanded like it should be. There is still though some air coming out of my lung which needs to seal off. Sounds like the earliest the tube would come out is tomorrow morning. I have to wait 24 hrs at least after the tube is out before i can come home. Right now I feel pretty patient, just hoping my lung will seal up on its own.
The last week has been harder on me. When you feel your body getting weaker, it's just hard. The thing I'm learning is how hard it is to write or admit this during the struggle. I want to wait till I've had a couple good days to update the blog. It seems like its human nature to have a certain amount of pride and good news is easier to report than bad.
Even before being in the hospital, I've felt my left leg getting weaker. I finished the oxygen therapy on tuesday this past week. It's hard to say if it helped. At least the swallowing did not get any worse, and maybe improved a little on liquids. My walking has been harder and I'm using the walker more.
But even with these challenges, I'm still trusting God. It would never do any good to get bitter. I just trust that God has some reason for letting all this happen. He is still in control. He knows the future. I can rest in that. My cousin reminded me that the Bible says that the Son intercedes for us and also that the Spirit intercedes to the father for us. So two parts of the three are pleading to the other on my (and your) behalf. I don't know that I really thought directly about that much before, but it is comforting.
As for prayer requests, please pray that my lung can seal up, that Leann and the kids can handle the extra stress, and that my attitude can be right and positive.
Thanks so much for all the help, love,and prayers.
Derek and Leann
The pulmonologist is the main dr in charge of my care. At least we found out today the Hawaii trip is off for now. She said I have to wait 6 weeks before flying. Leann and I are doing pretty good with this news since we are realizing this will be a bit of recovery and we didn't want to take a chance and end up in the hospital there. They have been taking X-rays every day and my lung is expanded like it should be. There is still though some air coming out of my lung which needs to seal off. Sounds like the earliest the tube would come out is tomorrow morning. I have to wait 24 hrs at least after the tube is out before i can come home. Right now I feel pretty patient, just hoping my lung will seal up on its own.
The last week has been harder on me. When you feel your body getting weaker, it's just hard. The thing I'm learning is how hard it is to write or admit this during the struggle. I want to wait till I've had a couple good days to update the blog. It seems like its human nature to have a certain amount of pride and good news is easier to report than bad.
Even before being in the hospital, I've felt my left leg getting weaker. I finished the oxygen therapy on tuesday this past week. It's hard to say if it helped. At least the swallowing did not get any worse, and maybe improved a little on liquids. My walking has been harder and I'm using the walker more.
But even with these challenges, I'm still trusting God. It would never do any good to get bitter. I just trust that God has some reason for letting all this happen. He is still in control. He knows the future. I can rest in that. My cousin reminded me that the Bible says that the Son intercedes for us and also that the Spirit intercedes to the father for us. So two parts of the three are pleading to the other on my (and your) behalf. I don't know that I really thought directly about that much before, but it is comforting.
As for prayer requests, please pray that my lung can seal up, that Leann and the kids can handle the extra stress, and that my attitude can be right and positive.
Thanks so much for all the help, love,and prayers.
Derek and Leann
Saturday, March 2, 2013
ER and admission to OSF
It's morning Derek had a coughing spell and his left lung partially collapsed. He had shortness of breath, and we came to OSF ER where we've had exceptional treatment including a procedure to put in a chest tube to get the air out and the lung has re-inflated. The leak appears to have sealed again. He is at risk for this happening again, and the real problem come Monday will be determining why he has had this persistent cough for a month. The lungs show some nodules, very small, but new in the last year. We have a PET scan coming up at Mayo the end of March. it may have to be made earlier. Our Hawaii trip, I would say, is in limbo... We were supposed to fly the 10th for 10 nights. Pray for healing, no more lung collapsing, and calm for Derek. Love you all. Leann
Saturday, February 9, 2013
Some Improvements
Sorry it's been so long since an update. I realized that time has been flying by and I meant to update last week but didn't have the energy. I'm not sure why but I've been really tired lately. It seems like the last round of temodar wore me out and I haven't recovered since.
Late last week I started noticing improvements in what I can do. Making it up the stairs at work is easier than it used to be. I think the swallowing is easier, particularly for liquids. I still have to use a lot of applesauce but it's easier to drink water anyway. Early last week I went to the doctor for my cough and it's not perfect yet but I'm coughing a lot less and sleeping through the night again. Last Friday I had a re-evaluation with my physical therapy at Hopedale. I improved in what I could do on that exam also, and they now rate me a 40% fall risk instead of 80%. My PT has changed to where I am just doing water therapy and doing it with Leann so we have more flexibility in what time of day we go, which helps a lot. The only downside is that Leann is a bit tougher of an instructor than the real ones were so I am a bit more worn out. But if feels really good to be in the therapy pool and it's a lot easier for me to try things when I don't have to worry about hitting the floor if I fall.
This week I have not felt many improvements, and I feel like things are pretty static as far as my abilities. For whatever reason I have felt more tired and spend most evenings napping in the chair. This weekend looks pretty slow as the kids have come down with pink eye and runny noses so I think we are pretty much home for the weekend.
We were really blessed with everyone's cooking for me the month of January. I think this was the first week that Leann had a chance to cook at all. Lots of good stuff for me to eat has been dropped off and we appreciate it.
This week I heard of a couple families who lost children to accidents of one sort or another. My heart goes out to them. I've said many times that it "appears I have less time" than others. It's only an appearance. None of us knows when our time on earth will end. Any of us could be taken in a moment of time. It's just a reminder to spend each day that God gives us here serving Him.
As far as prayer requests, please thank God with us that it has been somewhat easier walking and swallowing and pray that the improvements can continue. Thanks everyone for all the prayers & support we feel.
Love,
Derek & Leann
What I'm Learning from Cancer #12
Don’t have any buckets – you are probably wondering what I mean by “buckets”. It’s easier if I could draw, but let me try to illustrate in writing. What I mean is that we put the different facets of our life into buckets. We have a “work” bucket, a “family” bucket, a “spouse” bucket, a “spiritual” bucket. We try to separate and segment our life. I think it’s because it can be easier to analyze ourselves that way or something. And maybe this is just a problem for analytical people like engineers, but I don’t think so. An example: how many times at church do we hear “forget about the things of the week”? To some extent it is true, I should not be trying to complete a mechanical design in my head during church. But if my week was a struggle with a co-worker, a supplier or customer, or my wife, then I better not forget about my week as I come to church. I should be remembering my struggle and allowing God to work on my heart as it relates to my struggle. At work, how focused are we at getting the job done vs being attentive to the personal needs of our co-workers? We have gotten so busy that we don’t feel like we have the time to stop and talk with others.
Late last week I started noticing improvements in what I can do. Making it up the stairs at work is easier than it used to be. I think the swallowing is easier, particularly for liquids. I still have to use a lot of applesauce but it's easier to drink water anyway. Early last week I went to the doctor for my cough and it's not perfect yet but I'm coughing a lot less and sleeping through the night again. Last Friday I had a re-evaluation with my physical therapy at Hopedale. I improved in what I could do on that exam also, and they now rate me a 40% fall risk instead of 80%. My PT has changed to where I am just doing water therapy and doing it with Leann so we have more flexibility in what time of day we go, which helps a lot. The only downside is that Leann is a bit tougher of an instructor than the real ones were so I am a bit more worn out. But if feels really good to be in the therapy pool and it's a lot easier for me to try things when I don't have to worry about hitting the floor if I fall.
This week I have not felt many improvements, and I feel like things are pretty static as far as my abilities. For whatever reason I have felt more tired and spend most evenings napping in the chair. This weekend looks pretty slow as the kids have come down with pink eye and runny noses so I think we are pretty much home for the weekend.
We were really blessed with everyone's cooking for me the month of January. I think this was the first week that Leann had a chance to cook at all. Lots of good stuff for me to eat has been dropped off and we appreciate it.
This week I heard of a couple families who lost children to accidents of one sort or another. My heart goes out to them. I've said many times that it "appears I have less time" than others. It's only an appearance. None of us knows when our time on earth will end. Any of us could be taken in a moment of time. It's just a reminder to spend each day that God gives us here serving Him.
As far as prayer requests, please thank God with us that it has been somewhat easier walking and swallowing and pray that the improvements can continue. Thanks everyone for all the prayers & support we feel.
Love,
Derek & Leann
What I'm Learning from Cancer #12
Don’t have any buckets – you are probably wondering what I mean by “buckets”. It’s easier if I could draw, but let me try to illustrate in writing. What I mean is that we put the different facets of our life into buckets. We have a “work” bucket, a “family” bucket, a “spouse” bucket, a “spiritual” bucket. We try to separate and segment our life. I think it’s because it can be easier to analyze ourselves that way or something. And maybe this is just a problem for analytical people like engineers, but I don’t think so. An example: how many times at church do we hear “forget about the things of the week”? To some extent it is true, I should not be trying to complete a mechanical design in my head during church. But if my week was a struggle with a co-worker, a supplier or customer, or my wife, then I better not forget about my week as I come to church. I should be remembering my struggle and allowing God to work on my heart as it relates to my struggle. At work, how focused are we at getting the job done vs being attentive to the personal needs of our co-workers? We have gotten so busy that we don’t feel like we have the time to stop and talk with others.
So what I mean
here is that we should not isolate our spiritual life into it’s own
bucket. Our spiritual life should run
across all facets of our life, and be intertwined with our work life, our
family life, our marriage. If we put our
spiritual life in a bucket, then we don’t focus on how we can help others. We tend to fall into the ditch on either
side. Our “spiritual life” becomes
arguments of deep theological questions, or agonizing over details of church
tradition and custom. When we have our
spiritual life threaded through the real lives of our family and friends, we
are too busy helping others understand the reality of Christ’s instructions for
our lives to waste time in trivial discussions.
Just for my own
accountability, I want you all to know that if you see me being too busy, or
selfish, or un-interested in others – you can stop me and tell me so. I really want to be more in tune to the needs
of my family and others around me. I
want to remember that the Bible applies to all situations, not just the ½ hour
in the morning when I read it at my desk.
Wednesday, January 16, 2013
HyperBaric Oxygen Therapy
So we have now crossed over to where more than half of each day is spent at someone's doctor visit! I'm joking a little but not too much. Dr McDonald talked to Dr Hammack over the weekend and got agreement that it would be good for me to start hyperbaric oxygen treatment (HBO). So this morning we had an appointment to discuss this with the HBO doctor at OSF. And I actually got the first treatment in today. Here's the schedule: 5 days/week for 6 weeks. 8:30 am appts and the treatment takes about 2 hours. With a 40 min drive each way, this will take most of the morning every day. The good news is that we don't have to move anywhere to do it. It's the same basic treatment that they do for wounds. The goal is simply to supply more oxygen to the brain to help reduce swelling and radiation damage.
I'm doing physical therapy twice a week, once in the pool, once on land. I've still got the avastin treatments every 2 weeks, and I just started the second round of temodar last night. This time I knew to take my nausea medicine before hand and they had me take it just before bedtime. That's supposedly better for sleeping through any ill-effects of the medicine.
Monday I had the swallow study. Basically the right side of my throat is not working and food just sticks at the top. The left side is working ok. So if I turn my head to the right and down, then food will go down the left side. As far as liquids, they are working if I only take one swallow at a time, no continuous gulping. Now that I understand all this it is going ok. It still takes me a long time to eat and I am still eating something soft with everything.
I got a handicapped parking card yesterday. That will help the trips where I would have a long walk through an icy parking lot. Once I'm pushing a shopping cart, I do fine. Hopefully the HBO helps this improve and I won't need to renew it in 6 months.
Now you know the latest. Seems like the schedule is intense with medical visits these days but we finally have something that makes sense as far as symptoms and we have some hope that this HBO will help alleviate them. Just pray that this therapy will work as intended and my swallowing and walking will improve.
Thanks to all who have helped with babysitting and made soft meals for me. It's really appreciated. We've really felt everyone's prayers and support as things have gotten more challenging for me.
Love,
Derek & Leann
I'm doing physical therapy twice a week, once in the pool, once on land. I've still got the avastin treatments every 2 weeks, and I just started the second round of temodar last night. This time I knew to take my nausea medicine before hand and they had me take it just before bedtime. That's supposedly better for sleeping through any ill-effects of the medicine.
Monday I had the swallow study. Basically the right side of my throat is not working and food just sticks at the top. The left side is working ok. So if I turn my head to the right and down, then food will go down the left side. As far as liquids, they are working if I only take one swallow at a time, no continuous gulping. Now that I understand all this it is going ok. It still takes me a long time to eat and I am still eating something soft with everything.
I got a handicapped parking card yesterday. That will help the trips where I would have a long walk through an icy parking lot. Once I'm pushing a shopping cart, I do fine. Hopefully the HBO helps this improve and I won't need to renew it in 6 months.
Now you know the latest. Seems like the schedule is intense with medical visits these days but we finally have something that makes sense as far as symptoms and we have some hope that this HBO will help alleviate them. Just pray that this therapy will work as intended and my swallowing and walking will improve.
Thanks to all who have helped with babysitting and made soft meals for me. It's really appreciated. We've really felt everyone's prayers and support as things have gotten more challenging for me.
Love,
Derek & Leann
Friday, January 11, 2013
Symptom Theory
We received a call from Dr McDonald at IU this evening. He's the one that oversaw my radiation treatment. He says in looking at the head MRI, he sees signs of swelling in the area of the brainstem that would be potentially affecting the right side of my head and my right leg. He said the timing would also be right for this sort of swelling to be due to radiation. He says the fact that tumors in the spine are barely visible anymore leads him to think this is not tumor growth. He is going to call Dr Hammack on Monday to discuss with her.
As for treatment, he says that either hyperbaric oxygen therapy or some medicine (or both) can help the body get more oxygen to the affected area and have less damage/more healing. He said it's hard to know at what point this swelling will stabilize on its own, but these treatments will help. We are elated to finally have an answer that seems to make more sense. We'll post more next week but had to share the exciting news now.
Eating has been going better the last few days as I've learned how to eat the right foods and am learning to mix applesauce with everything. And several have brought soups and other soft stuff that has been great. Thanks for praying for us, and just pray that we have wisdom next week as we decide which treatments to continue/start.
Love,
Derek & Leann
As for treatment, he says that either hyperbaric oxygen therapy or some medicine (or both) can help the body get more oxygen to the affected area and have less damage/more healing. He said it's hard to know at what point this swelling will stabilize on its own, but these treatments will help. We are elated to finally have an answer that seems to make more sense. We'll post more next week but had to share the exciting news now.
Eating has been going better the last few days as I've learned how to eat the right foods and am learning to mix applesauce with everything. And several have brought soups and other soft stuff that has been great. Thanks for praying for us, and just pray that we have wisdom next week as we decide which treatments to continue/start.
Love,
Derek & Leann
Thursday, January 3, 2013
Over the flu
The good news is that I am finally over the flu I think. After spending all day Tues & Wed pretty much lying in bed or the living room chair, I finally spent today up and about. I was able to get my Avastin treatment this afternoon. I go back in on the 14th for them to check blood work prior to starting the next round of temodar. The first round went fine after the first day and once I started taking the nausea medicine. It did drag me down more though, and it was really hard to get out of bed in the mornings. This morning we went for physical therapy to try and get help with my walking. I'll go twice a week, once in the pool, once for normal therapy. There is hope with some muscle training that will improve. As I have started to get weaker in my right leg, then I'm favoring it more, which is contributing some to the problems.
I don't know how else to write other than to be totally open. It's tempting to act like everything is great because then I know you'll all be happy. I don't want to be overly pessimistic and discourage anyone. I'll try to be as truthful as possible. It's been a really hard last couple weeks. It seems like every couple of days there is some new handicap. The latest is difficulty swallowing. Thankfully my tongue has improved a little bit and I'm hardly biting it anymore. So the chewing is not the issue now. Now the problem is that food gets stuck in my throat. Eating has become very difficult. We are trying to figure out what foods I can eat and this afternoon I was looking for a baby food grinder to see if that helps.
So I definitely feel like my body is on the decline. I'm right at the cusp of needing to use a walker (I used it a bit today, but not all the time), we are working on putting in a stairlift at home, and now I'm eating soft foods like a 6 month old. I've had some down times with it all, but I'm keeping my spirits up as much as I can.
And then there was the clincher tonight. We are trying to encourage Lexi and Wesley to be in the homeschool spelling bee. Leann got a movie from the library about a girl from the ghetto who goes to the national spelling bee and wins it. I saw a picture she looked at a couple times that I was guessing was her father. There was no Dad around to be seen. At the very end it was confirmed that he was killed when she was 6 years old. Needless to say, I cried a lot. So afterwards we just spent a lot of time on the couch crying together. And then Whitley brought untold joy to my heart. We were talking about the soul going to heaven and being happy in heaven but sad to not be together on earth. And then she said "Daddy will die, and then Lexi die, and Mommy die, and Whitley die, and Lainey die, and he die (speaking of Wesley), and then we all be together in heaven and Daddy be happy" She's 3. This has to be the most amazing thing she has said to me. And obviously the kids don't understand, and I'm not sure we do entirely either. But's it's amazing at what young age they can know about heaven and hell.
Please don't be discouraged or give up praying. We still appreciate it so much and it gives us the strength to make it through when times are hard.
Derek & Leann
What I'm Learning from Cancer #11
It’s about the simple things. Last January, as I lay in the hospital bed contemplating the doctors’ prognosis, I was brought back to thinking about simple things. How much love had I shown my wife? Had I spent enough time with my kids? Had I talked to the unbeliever about his soul? I did not worry about what the explanation was of some tough theological question. Some theology matters, but I came to the conclusion 95% of our discussion of theology could be skipped and we could spend that time just putting into action the simple-to-understand commandments of Jesus about loving God first and then loving our neighbor as our-self. Jesus was questioned by a lawyer trying to trip him up. Matthew 22:36-39 “Master, which is the great commandment in the law? Jesus said unto him, Thou shalt love the Lord thy God with all thy heart, and with all thy soul, and with all thy mind. This is the first and great commandment. And the second is like unto it, Thou shalt love thy neighbor as thyself.”
I don't know how else to write other than to be totally open. It's tempting to act like everything is great because then I know you'll all be happy. I don't want to be overly pessimistic and discourage anyone. I'll try to be as truthful as possible. It's been a really hard last couple weeks. It seems like every couple of days there is some new handicap. The latest is difficulty swallowing. Thankfully my tongue has improved a little bit and I'm hardly biting it anymore. So the chewing is not the issue now. Now the problem is that food gets stuck in my throat. Eating has become very difficult. We are trying to figure out what foods I can eat and this afternoon I was looking for a baby food grinder to see if that helps.
So I definitely feel like my body is on the decline. I'm right at the cusp of needing to use a walker (I used it a bit today, but not all the time), we are working on putting in a stairlift at home, and now I'm eating soft foods like a 6 month old. I've had some down times with it all, but I'm keeping my spirits up as much as I can.
And then there was the clincher tonight. We are trying to encourage Lexi and Wesley to be in the homeschool spelling bee. Leann got a movie from the library about a girl from the ghetto who goes to the national spelling bee and wins it. I saw a picture she looked at a couple times that I was guessing was her father. There was no Dad around to be seen. At the very end it was confirmed that he was killed when she was 6 years old. Needless to say, I cried a lot. So afterwards we just spent a lot of time on the couch crying together. And then Whitley brought untold joy to my heart. We were talking about the soul going to heaven and being happy in heaven but sad to not be together on earth. And then she said "Daddy will die, and then Lexi die, and Mommy die, and Whitley die, and Lainey die, and he die (speaking of Wesley), and then we all be together in heaven and Daddy be happy" She's 3. This has to be the most amazing thing she has said to me. And obviously the kids don't understand, and I'm not sure we do entirely either. But's it's amazing at what young age they can know about heaven and hell.
Please don't be discouraged or give up praying. We still appreciate it so much and it gives us the strength to make it through when times are hard.
Derek & Leann
What I'm Learning from Cancer #11
It’s about the simple things. Last January, as I lay in the hospital bed contemplating the doctors’ prognosis, I was brought back to thinking about simple things. How much love had I shown my wife? Had I spent enough time with my kids? Had I talked to the unbeliever about his soul? I did not worry about what the explanation was of some tough theological question. Some theology matters, but I came to the conclusion 95% of our discussion of theology could be skipped and we could spend that time just putting into action the simple-to-understand commandments of Jesus about loving God first and then loving our neighbor as our-self. Jesus was questioned by a lawyer trying to trip him up. Matthew 22:36-39 “Master, which is the great commandment in the law? Jesus said unto him, Thou shalt love the Lord thy God with all thy heart, and with all thy soul, and with all thy mind. This is the first and great commandment. And the second is like unto it, Thou shalt love thy neighbor as thyself.”
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