Marc and I drove to Houston today to follow-up at MD Anderson after his hospitalization. Dr. Jung, Marc's neuro-oncologist, told us he was pleased with Marc's progress since his discharge last week. He said that he had reviewed the MRI and agreed with Dr. McDonald that the mass was smaller. He told us that the shrinkage would continue but would be slow and would be gauged over many months (not weeks) and would be measured by successive MRIs. He also said that he was very impressed with Dr. McDonald, our local neurologist and Dr. Jain, the hospitalist who has cared for Marc each hospitalization. He said that either he or his nurse practitioner spoke to Dr. McDonald and Dr. Jain frequently while Marc was hospitalized and after discharge. It is really wonderful to have such good collaboration between the caregivers. It sure makes us feel a lot better about everything.
Marc has started to have swelling in his lower legs and feet from taking the steroids again; although it is not nearly as bad as it has been in the past. Dr. Jung has started to slowly reduce the steroid dosage over the next 4 weeks to a more tolerable level. Hopefully that will make a difference and reduce the severe side effects of the high doses of the drugs.
Marc has regained nearly all of the strength back in his right hand. He is still having a great deal of difficulty with speech but it has improved some in the last week. We still have many fustrating moments when no matter how hard Marc tries, he cannot make me understand what he is trying to say. He can write now but the letters are often jumbled and don't make since (to me). Between the talking and writing I am understanding more but we still have a long way to go. We are back in speech therapy twice a week now and will continue until his speech improves to where it was before this last episode.
Marc's next followup with Dr. Jung is May 26th. He will have another MRI on May 22nd. We are praying that the results will again show shrinkage of the mass.
Tuesday, April 28, 2009
Wednesday, April 22, 2009
Home again!
After a long day yesterday we made it home about 8pm. It is so good to be home again. The neurologist told Marc last evening that he saw no reason he couldn't go home but that he would need to be discharged by the hospitalist who admitted him. She had made rounds early yesterday morning and was not scheduled to be back in until this morning. Marc was infuriated that he would have to spend another night in the hospital; so I asked the nurse to page her. She called back in and talked to the nurse, to me and again to the nurse and gave orders for Marc to be released. I am so glad, as I don't know how Marc would have managed another night in the hospital.
Marc had the repeat MRI yesterday morning. We didn't get the results until the neurologist came in about 6pm. There is basically no change since the last MRI. However it is difficult to really tell as the MRIs were done at different sites, using different techniques. The report indicated a small, 17mm mass just behind the initial tumor site. Taken by itself, the news would be discouraging but comparing it to the MRIs done at MD Anderson the news was encouraging. The mass on the March 6th MRI measured 25mm and on March 30th it measured 22mm. We think that the mass is smaller; but what we know for sure is it has not gotten larger!
Marc has had no seizures for the last 3 days. The focal seizures were almost continuous for 3 days from admission. That in itself is enough to cause issues. Marc again has lingering effects from the seizures; his speech has suffered and he has right sided weakness, especially in the arm and hand. The weakness is worse than it was when he was diagnosed last October. The speech is also bad, but not quite as bad as it was when he was initially diagnosed. He gets stuck on words, for example when he tries to say something it come out as "we can walk" and then he just continues repeating "walk, walk, walk, walk" or "win" or "water", etc. It is a guessing game most of the time to figure out what he is trying to tell me and I am not very good at guessing, which tends to frustrate Marc even more. We have speech therapy and physical therapy evaluations scheduled tomorrow and will follow their recommendations for further therapies.
An old friend stopped by this afternoon to see Marc. He was touched and thrilled to have a visitor. I know he gets tired of listening to and looking at me and it was good for him to see someone else for a change. Please feel free to stop by to see Marc, it means a lot to him.
Marc is very frustrated and I cannot begin to imagine how he feels. I cannot empathize but I can understand his anger and frustration. I just have to keep asking myself "How would I feel if I couldn't express myself or do the things that I normally do?" It is difficult for both of us but we will manage. Your prayers and support are very important to us.
Marc had the repeat MRI yesterday morning. We didn't get the results until the neurologist came in about 6pm. There is basically no change since the last MRI. However it is difficult to really tell as the MRIs were done at different sites, using different techniques. The report indicated a small, 17mm mass just behind the initial tumor site. Taken by itself, the news would be discouraging but comparing it to the MRIs done at MD Anderson the news was encouraging. The mass on the March 6th MRI measured 25mm and on March 30th it measured 22mm. We think that the mass is smaller; but what we know for sure is it has not gotten larger!
Marc has had no seizures for the last 3 days. The focal seizures were almost continuous for 3 days from admission. That in itself is enough to cause issues. Marc again has lingering effects from the seizures; his speech has suffered and he has right sided weakness, especially in the arm and hand. The weakness is worse than it was when he was diagnosed last October. The speech is also bad, but not quite as bad as it was when he was initially diagnosed. He gets stuck on words, for example when he tries to say something it come out as "we can walk" and then he just continues repeating "walk, walk, walk, walk" or "win" or "water", etc. It is a guessing game most of the time to figure out what he is trying to tell me and I am not very good at guessing, which tends to frustrate Marc even more. We have speech therapy and physical therapy evaluations scheduled tomorrow and will follow their recommendations for further therapies.
An old friend stopped by this afternoon to see Marc. He was touched and thrilled to have a visitor. I know he gets tired of listening to and looking at me and it was good for him to see someone else for a change. Please feel free to stop by to see Marc, it means a lot to him.
Marc is very frustrated and I cannot begin to imagine how he feels. I cannot empathize but I can understand his anger and frustration. I just have to keep asking myself "How would I feel if I couldn't express myself or do the things that I normally do?" It is difficult for both of us but we will manage. Your prayers and support are very important to us.
Monday, April 20, 2009
Still here
We are still at Woodlands Memorial Hospital. Marc seems a little more communicative tonight than he has been. So far his tests showed a deep vein thrombosis (DVT) in the femoral and poplietal veins in the left leg; the same leg as the previous DVTs in December. The Dr. recommended that Marc have an inferior vena cava filter placed to prevent future pulmonary emboli. The filter will block any large clots from going to the heart, lungs or brain while at the same time allowing blood flow through the vena cava; thus preventing complications such as stroke, heart attack or pulmonary emboli. The filter was inserted under conscious sedation today using the same procedure they use for cardiac caths only in the femoral vein instead of the femoral artery. The procedure took only about 10 minutes and Marc was laughing and smiling when he came out, from the "happy juice" he was given for sedation. It was nice to see him smile as it has been awhile.
The neurologist and the neuro-oncologist still believe that the issue was weaning Marc from the steroids. The steroids worked well keeping the inflammation from the brain and when they were stopped the inflammation returned and presented itself with the seizures. Marc is back on the steroids and will remain on them, we just have to find the right dose. You can bet I will argue if they tell us to wean them again! They have also added another antiseizure medicine to the list of medicines he is taking. It's a good thing that Marc is good at taking pills or I would really have my hands full. So far this admission he has had 3 CT scans all showing no changes and has an MRI scheduled for tomorrow.
Marc has been up walking in the room today and told me "We have to walk!" and headed out the door to the hallway. He then stopped at a wheelchair that was in the hall, sat down and said "now walk"; so he sat and I walked (pushed). He sure hasn't lost his warped since of humor.
Julie is going to bring the grandkids up to see him later tonight for a bit and I am sure that will thrill him. He always perks up when they are around.
I will post more in a couple of days. Your prayers and thoughts are appreciated.
The neurologist and the neuro-oncologist still believe that the issue was weaning Marc from the steroids. The steroids worked well keeping the inflammation from the brain and when they were stopped the inflammation returned and presented itself with the seizures. Marc is back on the steroids and will remain on them, we just have to find the right dose. You can bet I will argue if they tell us to wean them again! They have also added another antiseizure medicine to the list of medicines he is taking. It's a good thing that Marc is good at taking pills or I would really have my hands full. So far this admission he has had 3 CT scans all showing no changes and has an MRI scheduled for tomorrow.
Marc has been up walking in the room today and told me "We have to walk!" and headed out the door to the hallway. He then stopped at a wheelchair that was in the hall, sat down and said "now walk"; so he sat and I walked (pushed). He sure hasn't lost his warped since of humor.
Julie is going to bring the grandkids up to see him later tonight for a bit and I am sure that will thrill him. He always perks up when they are around.
I will post more in a couple of days. Your prayers and thoughts are appreciated.
Wednesday, April 15, 2009
Back at the hospital again . . .
Well, after the good news last week we are sorry to report that Marc was hospitalized last night. He started having focal seizures sometime Tuesday while I was at work. He had the presence of mind to call me at work and although I couldn't understand what he was telling me, as the seizures affect his speech, I knew immediately what was happening. I called the neighbors to go stay with him until I could get home and called Steve, who fortunately was only a few miles from home. It took me about 40 minutes to get home and try as I might, I couldn't even speed getting there. There was a slow vehicle ahead of me the whole way home! Anyway, when I got home, Steve had Marc sitting on the patio. Marc was having what seemed a continuous focal seizure. He was able to communicate by writing. Long story short, he said he knew of 8 seizures he had had before I got home. I immediately called his neurologist. We initially opted to treat him at home by giving him an oral, loading dose of dilantin and only hospitalize him if his symptoms worsened. At about 8 o'clock, Marc wrote "Emergency" on his notepad, indicating that he felt he needed to go to the ER. Steve and I immediately took Marc to the ER and he was eventually admitted.
The initial CT done in the ER showed a suspicious area located where the GMB was removed. The CT was repeated today, which showed no enlargement in the area. The radiologist was initially concerned that there might be a bleed in the area but the repeat CT ruled that out. Our neurologist said that he feels the suspicious area is the same one we were looking at on the MRI. The problem seems to be that we had weaned Marc from the steroids just the week before. The steroids work to keep the swelling down in the brain but also cause multiple other adverse side effects. We now realize that each time that Marc has been weaned from the steroids, the seizures raise their ugly head. The solution is to find a dose of steroids high enough to keep the brain swelling down while at the same time low enough to keep the other adverse side effects at a minimum.
We are now in a stabilizing mode. The neurologist is adding another antiseizure medicine to Marc's medication regimen and started him back on steroids. The neurologist is working in conjunction with our neuro-oncologist at MD Anderson. Marc will remain hospitalized until he is stable, probably just a few days.
Please continue to keep Marc in your daily prayers.
The initial CT done in the ER showed a suspicious area located where the GMB was removed. The CT was repeated today, which showed no enlargement in the area. The radiologist was initially concerned that there might be a bleed in the area but the repeat CT ruled that out. Our neurologist said that he feels the suspicious area is the same one we were looking at on the MRI. The problem seems to be that we had weaned Marc from the steroids just the week before. The steroids work to keep the swelling down in the brain but also cause multiple other adverse side effects. We now realize that each time that Marc has been weaned from the steroids, the seizures raise their ugly head. The solution is to find a dose of steroids high enough to keep the brain swelling down while at the same time low enough to keep the other adverse side effects at a minimum.
We are now in a stabilizing mode. The neurologist is adding another antiseizure medicine to Marc's medication regimen and started him back on steroids. The neurologist is working in conjunction with our neuro-oncologist at MD Anderson. Marc will remain hospitalized until he is stable, probably just a few days.
Please continue to keep Marc in your daily prayers.
Sunday, April 12, 2009
Happy Easter to all
We had a wonderful Easter dinner today at Steve and Julie's. Steve cooks the best barbecue ribs ever! It was nice to just relax and watch the Grandchildren play. We also celebrated Annie's birthday, a few days late. She turned 4 on the 8th of April. We ended the afternoon by watching Brayden and 
Annie hunt for Easter eggs.It is a blessing that the kids live so close. They have been such a support for both Marc and I during Marc's illness. We couldn't have managed without them.
The chemo is hitting Marc pretty hard. He just gets to feeling good and then it is time to start the chemo back up. He tires easily and feels very weak. He gets tired of sitting so gets up and starts a new project. He has too much time to think! Last week he purchased some Italian cypress trees to plant on the East side of the driveway. Friday after I left for work he started planting. He said it took him 6 hours to plan 1 tree. He said he would dig for 10 minutes and rest for 30. Fortunately Steve and Brayden came by and helped out by planting the other 7. Marc still wants to replace the windows in the house and replace the siding but I think those projects will be on hold, at least for a while anyway.
Marc has another MRI on May 22 and will follow-up at MD Anderson on the 26th. We are praying for more good news.We would like to wish you all a very Blessed Easter and continue to ask for your prayers for Marc's full recovery.
The photos are from top to bottom: Annie and Paw Paw, Abbie standing on the picnic table and Brayden trying to get an egg down from the umbrella.
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