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
Wednesday, January 16, 2013
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.”
Subscribe to:
Posts (Atom)