How quickly things change...

Well, this is the post that I has hoping to never write 14 months ago when Dad was diagnosed with his brain tumor and I started this blog. It seems like yesterday on one hand, and many moons ago on the other. In the last 3 days, Marc has really taken a turn for the worse. As you have read, Mom brought him home and he was getting stronger, but then over night, an about face. On Saturday, it seemed that Dad had lost all strength and started on a quick slid. Steve, the kids, and I were in California with my side of family, when Marcia called to let us know we needed to get back. Today, I am looking at him in his bed sleeping at home, while with the help of hospice, we are doing everything we can to keep him comfortable. These are his final days; he has stopped eating or drinking, doesn't respond often, and his body hurts every where you touch. We have been able to control the pain as long as we are diligent on getting him his medicines even while he is sleeping.

This has been a journey with many ups and downs. We all know Marc to be a fighter and he remained true to that through this whole journey. With Mom standing next to him (and many times holding him up), he has fought every battle brought at him (and there has been plenty). Yet at some point, enough is enough, and your body is done and I think Dad recognizes this and is ready. He seems to be at peace. For the rest of us, it doesn't come as easy to be at peace. We know that he is in pain and don't want that for him, but it is hard to say good bye to, as Annie said today, "the best PawPaw in the whole world".

Dad has been the best PawPaw; supporting Brayden and all of the boys on his team in baseball, rides on the "tractor" for Annie, and kisses on Abbie's nose make my three kids think he hung the moon - he is their hero. It has hit them hard since we have been home. I talked with Brayden and he just cried and cried and when he hugged PawPaw good-bye, PawPaw used the strength that he had to grab his head and pull him closer. When I talked with Annie, she just sobbed and said it isn't fair and she is going to really, really miss him when he is in Heaven. She then asked me "where will all my sadness go Mommy?" and just broke my heart. I don't tell these stories to bring tears (although I have had plenty) but to show just what an impact this man has had in our lives. PLEASE share stories of the impact he has had on you as well as we want to remember him for all of the great times and laughs we have shared over many years!

As we spend all the time we can with Dad over the next few days, we will try to keep you posted. We want to be with him and keep him as comfortable as possible until the very end. I know he knows how loved he is by us, and all of you. Please keep us all in your prayers as you have done for a year as we need to remain strong and have peace with his passing.

From our family, may 2010 bring happiness and health to you and yours.

Julie

It's a wonderful life!!

Marc got home from rehab about noon on Christmas Eve. It is so good to have him home again. He hadn't been out of bed for 3 days before coming home so I was a bit apprehensive. The ambulance crew put him in the hospital bed in our living room and he slept for a couple of hours. The hospice nurse came by to do the admission assessment and he smiled, made faces at her and conversed as much as he could. When she left he wanted to get up into his recliner. I was a little nervous about transferring him from the bed to the wheelchair and was very surprised that the transfer went smoothly. Marc was able to stand, move his feet just enough to pivot so his back was to the wheelchair and sit down. (We have perfected the transfer process over the last few months - he puts his arms around my neck and I hold him around his chest, just like a big hug.) Then over to his lift recliner we went and again transferred smoothly. There he reclined and slept for the rest of the evening and into the night. We were both so tired that we slept until about 3:30 this morning. I don't know what woke us up but I looked at him and told him Merry Christmas. What a joy it was to hear him tell me Merry Christmas. We both went back to sleep and slept soundly until about 8:30 this morning.

Today was a quiet and relaxing day. I piddled around the house, putting things away from his stay in the rehab center and catching up on laundry. About noon I asked him what he wanted for Christmas dinner. I gave him a choice of roast beef or ham. I had pictures of several foods so that he could point to his choice . . . he chose lasagna. Leave it to Marc! Of course I had no lasagna, so I took him into the kitchen, got out the ham and the roast, told him to pick what he wanted and he chose the roast.

Marc really perked up this afternoon when a friend stopped by to visit. Then my parents came over for the afternoon. We spent the afternoon watching Home Alone and then had dinner. Marc had not eaten anything in the last 5 days so I was very pleased to see him eat roast, potatoes and corn followed by cherry cheese cake for desert. It was wonderful to see him enjoying his meal. It's the first home cooked meal he's had since Thanksgiving.

After dinner he wanted to go back to his recliner, where he has been softly snoring ever since. I so enjoy his snores! He is having no pain and is resting peacefully.

It has been a wonderful Christmas. It truly is a wonderful life and we are blessed to have this time together!

It's Saturday and we're still not home . . .

Yep, we are still in the rehabilitation center. Needless to say, we are very disappointed. Marc had another downturn - he became much weaker, wouldn't eat and would hardly drink anything. They thought that he was dehydrated so they gave him a bolus of IV fluid followed by another liter of fluid. That seemed to perk him up a little but later in the day he seemed to worsen. The only think that made him open his eyes was seeing the grandchildren.

He had a rough night last night, he was restless and couldn't seem to get comfortable no matter how I positioned him. He wouldn't talk to me through the night, he just moaned and groaned and I really thought he had just given up. I was ready to tell the Dr. to get in touch with hospice and make preparations to take him home.

This morning, however, when the nurse came in and said "How's my buddy this morning?" Marc smiled and waved. You could almost have picked me up off the floor! By 10 am I had him up in the wheelchair (it took 2 of us to get him up) and bathed him. I asked him if he was giving up or was going to work to get out of here and he gave me a thumbs up to "getting out of here". Then the physical therapist came in and started joking with him saying "there's my Budgie" and he started making faces at her. He spent an hour in PT and when he came back to the room the Dr. was there. He said that all of his labs returned normal, not what he expected at all but the chest X-ray he ordered 3 days ago had not been done so he ordered it again. He said he couldn't find anything physical to cause the symptoms. I asked if it couldn't be depression and he told me that he often sees patients respond like this when they reach a plateau with therapy and think they will never improve. He said he suspected that depression could be the cause. Marc is already on an antidepressant so the Dr. decided to increase the dose some and add an appetite stimulant to his medications as he hasn't eaten anything in the last 3 days. He has lost another 10 pounds this week. After the Dr. left Marc ate the bread pudding and pushed the rest of the tray away, refusing to eat anymore of his dinner.

Steve came in and Marc smiled and made faces at him but then started falling asleep in his wheelchair. Steve and I put him back to bed to let him rest. I was amazed at the change in strength, Marc was able to stand holding on to me and take 4 steps to the bed. What a wonderful improvement. I came home to get some laundry done and wrap some Christmas gifts and will go back before they bring his dinner tonight. I am hoping that he will decide to eat something tonight.

Please say a prayer for Marc. I will let you all know how things go. As of yesterday afternoon the insurance had approved Marc's stay until the 28th. Hopefully he will get home before the kids get back from California on the 29th and we will be able to have our late Christmas at home with them.

It's a long story and I'm delinquent in telling it!

We had seen the oncologist at MD Anderson on November 17, Marc was doing well and was started back on the oral chemotherapy. The oncologist said he thought that they had rushed it changing him to the IV chemo and felt that with no new tumor showing on the MRI that it would be best to change Marc back to the oral chemotherapy and on a regimen of 5 days on chemo every 28 days. He started the oral chemo again on November 19th.

The chemo seemed to hit him really hard and he started getting weaker day by day. He was still going to outpatient physical, occupational and speech therapy each 3 times a week but even with the therapy he just became pretty much debilitated. By November 30th it was all he could do to get from his recliner to his wheelchair. That night he started sounding congested in his chest and by 5 in the morning his breathing sounded "wet". I checked his oxygen saturation and it was 76%, a normal is 95 to 100%. His blood pressure was elevated and he just didn't look good. I tried to get him up into his wheelchair and was unable to so I called the ambulance. Needless to say, he was admitted to the hospital.

He was hospitalized on Tuesday and diagnosed with diastolic congestive heart failure. With treatment his condition improved but he had become so weak that he could barely stand with the assistance of 3 physical therapists. He was discharged on Friday back into rehabilitation.

The first couple of days in rehab his congestion increased again. A chest X-ray revealed bilateral lower lobe pneumonia and he was started back on antibiotics. Fortunately he has quickly improved but remains dependent on oxygen. If he is off the oxygen for any time at all his oxygen saturation goes down to the 80s.

The last 2 days he has shown significant improvement and today was able to walk from his room to physical therapy, about 150 ft, and only had to stop to rest a couple of times. He stays up all day now and his spirits have improved. I have included a couple of pictures; the first was taken yesterday and the second today. I couldn't get him to smile much for the pictures but if you look close you can see the start of a smile on the right. He is now cutting up with the staff and acting more like his old self. He actually does smile a lot now and it is so good to see.

We are hoping that he will get to come home Friday and if he keeps improving at his present pace, that should not be a problem.

We want to thank all of you for your prayers, support, kind words and actions. We couldn't have made it this far without you! Please continue to keep Marc in your prayers.

Merry Christmas to all from: Marc, Marcia, Steve, Julie, Brayden, Annie and Abbie.

Great News Today!!!

Marc and I went back to MD Anderson today for the latest MRI results and got some great news -- the only thing visible on the MRI is the empty tumor cavity. There is no evidence of any new tumor growth!! What great news and we are thrilled.

Marc pain has improved significantly since he had the vertebroplasty. The difference is amazing. He now only needs pain medications a couple of times a day. The neuro-oncologist is arranging for a bone density study and is referring Marc to an endocrinologist to see if the newer medications for osteoporosis will help Marc's condition. We are hoping the medication will help Marc to avoid any further fractures in the spine or elsewhere. We will just have to wait and see what the studies show and what the specialist thinks about possible treatment.

Marc has shown some improvement since he has been home. He is now walking some with the walker. His caregiver takes him to physical and occupational therapy 3 times a week and he is going to speech therapy 3 times a week. His days are quite busy now, which is good. His speech seems to have improved a little, still not good but the improvement gives us hope. His speech therapist has arranged for us to try out a speech assistive device called Lingraphica. It has shown good results in trials on patients with aphasia. I have a friend whose mother is using one now and she is very pleased with the results just after a few days. With any luck at all it will help Marc with his communication skills. That would be a blessing all around! Marc gets so frustrated, he knows what he wants to say but the words just won't come out. It frustrates me too as I sometimes have no idea what he is trying to tell me.

Please continue to keep Marc in your prayers.

Home from rehab. and not a minute too soon!

Marc had a wonderful surprise from his buddies from the Ratshack, a social networking internet site that Marc has been involved in for a long time. For several years they have had a get together at a campground near here. Marc and one of the other fellows were the organizers of the "Rat Fest", as it is now known. About 15 of them arrived at the rehabilitation center and surprised Marc on Halloween. It was really nice to see old friends and the joy on Marc's face was priceless. It was pure pleasure to see Marc laugh and clown around with them. I have inserted a few pictures of their visit.

I brought Marc home from rehab today and he couldn't be happier. I think some days he thought he was never going to get home again.

The therapy has been good for him and he is much stronger now. He can make it to the bathroom and back using the walker now. It is still a struggle for him but he is a fighter and is determined to get better. He still struggles with his speech, the aphasia hasn't improved much but every now and then he gets something out that he wants to say. That is an improvement. I have arranged for him to go back to the speech therapist that he had before and I am hoping that will help. I have also found a computer assisted language system that I hope will be approved by the insurance company. It should help a lot, if it works like they say. It will speak phrases for Marc and will also help him to relearn some of the things he has lost in his language skills.

It's now been a little over a year now since Marc was diagnosed. He has a followup appointment on Tuesday with the oncologist. There is no MRI scheduled at this time so I'm not sure if they will restart the chemo without repeating the MRI. I will let you all know when I know more. For now we are just going to enjoy Marc being home again.

It's been a long time since the last update . . .

I have been putting off updating the blog because I really don't have any good news. After Marc's discharge from MD Anderson he got progressively weaker. It took two weeks to get home health to the house to get physical therapy started back up and by that time he could hardly stand, and then only with a lot of help. Another week of PT showed no improvement so I started calling trying to get him back into rehabilitation so that he could get some intensive therapy. That took another week.

The first day in rehabilitation Marc would do nothing but lay in bed with his eyes closed. He wouldn't even talk to me. He was angry that he was there. I talked to him that night and explained that I didn't want him there any more than he wanted to be there but it was to the point that I could no longer care for him at home. I told him that he needed to work hard to regain his strength to get back home. The next morning it was like he was a completely different person, his attitude had changed and he was responding to me and to the staff. He even smiled and shook hands with the physical and occupational therapists before I left for work. He progressed quickly from being basically bed bound, to being in the wheelchair most of the day and walking with the walker. By the end of the first week he was getting up alone, he was a little unsteady, but got up under his own power. He was also staying up all day and most of the night and driving the staff nuts. They had wheelchair alarms and bed alarms set but that didn't make any difference, when Marc wanted up he was getting up!

Last Friday he started complaining of abdominal pain again. The same pain as before. The pain seemed to radiate around his waistline. The pain was controlled the first couple of days with Tylenol but gradually became more severe. The internist evaluated Marc and felt that the pain might be neurological, and compared it to the pain that someone with shingles feels but much worse because it encircled the abdomen and wasn't on just one side as it is with shingles. Because Marc had been on long term, high dose steroid therapy he felt that there might be compression of spinal nerves. As I thought about it, that made since as Marc is now eye to eye with me when we stand face to face and he had always been nearly a head taller than me. An X-ray of the lumbar spine was ordered which did show an old compression fracture of the L2 disk. I asked what they meant by old and was told that some calcification of the fracture was present so it could be a few weeks to a few months old. Which means the IVC filter was probably not the cause of the pain in the first place. Why the pain stopped for a time after the filter was manipulated is unknown. In order to confirm the diagnosis, Marc has an MRI of the lumbar spine scheduled on Friday afternoon.

A pain management specialist was consulted but so far has just changed the pain medication. The stronger medication helped a little at first but Marc is now on the maximum dose with little relief. Any movement, even taking a deep breath causes him to cry out in pain. I am able to get him up in the wheelchair in the morning when I go in and he will eat breakfast. I usually park him in the lobby by the nurse when I leave for work and they will put him after bed after physical therapy. He will usually remain in bed most of the day and I will then get him up again when I get there after work. He was up in the chair most of the afternoon today. I was told he took a long nap after this morning's physical therapy. Steve came in to see him this afternoon while he was eating a late lunch. Steve asked if he wanted some ice cream and Marc's response was a thumbs up. So Steve went out and bought him a pint of Blue Bell ice cream. As you can see by the picture, Marc really enjoyed the treat! When I got there after work Marc had just finished eating part of his dinner and had pushed away the rest. He pointed to the bed. I could tell he was tired and wanted to get back into bed. He still has enough strength that I can transfer him without help but he can only stand a few seconds with assistance because of the pain.

He seemed to sleep for a couple of hours but would moan out in pain with any movement. When I kissed him goodbye tonight it took everything he could do just to kiss me. Just that little movement was excruciating. It just breaks my heart to see him in so much pain. It is so hard to leave him there but I have no choice. I have to work and have no other options.

I do have a caregiver who stays with him when he is home and she will come back when Marc gets back home. He likes her a lot and she seems very good to him.

I will try not to be so delinquent in posting to the blog, I know everyone appreciates the updates. Please continue to keep Marc in your prayers.

12 Days at MD Anderson

What started out as a trip to MD Anderson for an outpatient surgery to place the Port A Cath and ended up as a 12 day hospitalization. The Port A Cath placement went well but Marc's BP went sky high after the procedure was completed. Because of that Marc was kept overnight for observation. Complicating matters the abdominal pain worsened and became unbearable for Marc.The blood pressure improved slightly overnight but the abdominal pain worsened. So when he was discharged in the morning from the outpatient surgery center, I took him directly to MD Anderson's Emergency Center.

After multiple tests in the Emergency Center, Marc was admitted for further testing to determine the cause of the abdominal pain and to get the blood pressure under control. While talking to the neuro-oncolcgist I mentioned that I had thought for a long time that the cause of Marc's abdominal pain was the IVC filter because the pain had started about a week after the filter was inserted and progressively worsened. The pain had become so severe that Marc was using a Fentanyl patch and taking morphine sulfate every 6 hours which failed to help the pain. Note that I had told every Dr. we had seen since the palcement of the filter that I wondered if the cause of his abdominal pain might be the IVC filter and was told that would be very unlikely . Well I finally found a Dr. that listened to me - he left the room and read the possible complications of IVC filters and returned saying "You are right, I am positive that is the cause of the pain". But complicating the diagnosis the gastroenterologist who examined Marc felt the cause was GI related due to the high steroid doses and the Avastin (the chemotherapy that Marc is now on). Marc was then seen by an interventional radiologist who felt that it was unlikely the pain was from the IVC filter and agreed that a GI workup should be completed before considering the removal of the filter. First of all he felt it unlikely that the filter was still retreivable because of the lenght of time it had been in place; secondly he felt an EGD (endoscopic evaluation of the esophogus, stomach and duodenum) should be completed before attempting the retreival because it was much lower risk. They (the Drs.) went round and round about which procedure should be done first.It was initially decided that the EGD be done first, to the dismay of the neuro-oncologist.

Then it was cancelled because Marc's BP was elevated and anesthesia refused to assist with the procedure. The EGD was scheduled for a week ago last Thursday. Marc was not allowed food or drink (NPO) after Midnight on Wednesday. The procedure was scheduled for 3 pm that day. Well at 5 pm, the procedure was unexplectedly canceled. The EGD was rescheduled for 3 pm the next day and wouldn't you know the procedure was canceled because Marc's BP was elevated and anesthesia refused to assist with the procedure. This was Friday and again Marc had been NPO since midnight the night before. Marc was furious and his BP went up even more. That meant staying in the hospital through the weekend.

Because the BP was so elevated an internal medicine specialist was consulted and felt like Marc needed to add 3 different BP medicines to keep the BP under control. More labs were done. By Monday Marc was so debilitated that he could hardly get out of bed, his oxygen saturation was low and his blood gasses showed a very low oxygen level. Marc was placed on oxygen and his oxygen levels were monitored continuously. His condition seemed to deteriorate more each day. I was able to take him to the lobby on Sunday to visit with Steve, Julie, Brayden, Annie and Abbie. Annie later told her Mom that she wanted to be a nurse when she grew up so that she could work at this hospital and take care of her Papa.

Finally the decision was made to proceed with attempting the IVC filter removal and that procedure was scheduled for 1pm on Monday. When we got to the holding area to prepare for the procedure the interventional radiologist came in (a different Dr. from before) and said he did not feel comfortable doing the procedure until GI complications were ruled out. Since the EGD was already scheduled for 3 pm that day he recommended that Marc go ahead and have the EGD and the IVC filter retrieval be scheduled for Tuesday. Well by the time we got back up on the floor the EGD had been canceled by the schedulers and rescheduled for Wednesday afternoon. So now Marc still had the filter removal scheduled prior to the EGD. After many phone calls to different physicians, Marc's nurse contacted the patient advocate who miraculously go the EGD scheduled for 5 pm that evening. We waited in the holding area for almost 2 hours before they took Marc back for the procedure. Marc was back out within 15 minutes with a report of no GI problems found. We finally got back to his room about 8:30.

The next day the IVC filter retrieval was scheduled for 3pm. And for the second day in a row Marc was kept NPO after midnight.Transportation showed up at about noon to take him down for the procedure. We waited in the holding area until about 3 pm before Marc was taken back for the procedure. Marc was already agitated because of the long wait. He was in the procedure room for over an hour and the Dr. explained that he was unable to remove the filter. He said that at one time during the procedure he actually thought he was going to get it out but then got to a point that he felt would injure the vena cava if he forced the removal. So we thought the procedure was in vain. I don't know what Marc was given for anesthesia but he was extremely agitated after the procedure. One of the nurses tried to force him to do something (I don't remember what) and he slapped at her and yelled "no". It didn't take them 5 minutes to release him to his room. That night was a nightmare! Marc was agitated all night. He kept trying to get out of bed (he had to lie flat for 4 hours after the procedure was completed) and didn't want to listen to anything I said. Finally about 4 am I got him up in the chair and he seemed to fall asleep and started to snore. I lay on the bed reading and must have dosed off and was awakened about 4:30 by Marc trying to get out of the chair. He was so weak he could hardly stand. By the time I got to him he was nearly in the bathroom (only a couple of steps from the recliner) hanging onto the door jam. I couldn't hold him up with him in the position he was in so I let him gently down to the floor. He got on his hands and knees and crawled into the bathroom. I am not sure how I got him back up but I eventually got him back in the chair. By then it was nearly 5 am and there was no going back to sleep. Marc was exhausted and so was I!

The next day all Marc couldn't get up without assistance from 2 people. His urine output had increased so much the endroconologists were consulted. They decided that he might have diabetes insipidus as a result of the removal of the pituitary macroadenoma last November and said the condition could occur up to a year after the procedure. So again more testing was done. His urine output was monitored closely. He also had an elevated serum sodium level and low potassium and magnesium levels. His IV fluids were changed and he was stared on potassium and magnesium by IV infusion. His oxygen saturation remained low and he was on continuous monitoring of his vital signs. The only good thing was that he no longer complained of abdominal pain.

Julie graciously offered to spend the night to help me with Marc. I fell asleep in the chair and don't remember anything until morning. Julie asked me the next morning if I remembered telling Marc to "sit down and shut up". I have no memory of that or of the nurse asking me which medication she should give him to help settle him down so he could rest. Julie says I answered her but I don't remember. I felt more rested the next day than I had felt in a long, long time.

That afternoon, Marc attempted to get out of the chair. I was just across the room on my laptop when I heard a thud. I found him on his knees in front of the chair. It took a nurse, 2 aides and myself to get him up and back in the chair. The nursing supervisor decided that for Marc's safety they needed to get a sitter to stay the night. He wasn't much of a sitter, more of a talker and just kept telling Marc all night that he needed to stay still. About 3 am I woke up hearing the sitter tell the RN that "he just wouldn't stay still, I told him he was going to pull out his IV". At that time I realized that Marc had in fact fulled out his IV. The IV team had to be called to replace the needle in the port. I dreaded seeing what the daytime sitter would be like! I am not sure that we needed her because Marc was scheduled for an MRI under sedation at 10 am.

The MRI was scheduled to evaluate for new tumor growth and to assess the pituitary for abnormalities as Marc had developed some new right sided weakness during the time he was so debilitated. I was concerned that there might be some changes in the tumor due to the new symptoms. The most refreshing news I have had in a long time were delivered by the neuro-oncologist just as Marc was being taken back to his room. He said that he saw no new tumor growth and saw no abnormalities in the pituitary. The dictated report had not been completed yet by the radiologist but should be done in the morning. We - Marc, Julie and myself, cried some tears of joy upon hearing the news.

Julie is again spending the night and Steve is home with the kids. He is suffering from a sinusitis and I told him he couldn't see his Dad until he had been on antibiotics for 24 hours. Marc even called him tonight and talked to both Steve and Annie. We have had some laughs tonight as you can see from the picture above. Marc got a kick out of telling the sitter he wanted pillows until he was covered in pillows and linens. It is so good to hear his laughter and see him smile.

We are looking forward to being discharged to home tomorrow. I pray that the smiles and laughter continue. It is wonderful to see Marc pain free. The doctor tells us he should be in "Medical Miracles". I don't care about that but I pray that his recovery continues. He was able to get his third dose of Avastin today (the current chemotherapy) and is scheduled to get it again in two weeks. He will have followup labs this week and next and we will have another MRI on 9/28 and see the neuro-oncologist again on 9/29.

Another day at MD Anderson

8/10/09
Marc had his second round of IV chemotherapy today at MD Anderson. We had to be there early to have lab drawn and the chemo wasn't scheduled until 3:30 this afternoon. All went well until about an hour after we checked in for the chemo. The clerk came out and told us that Marc would have to come back tomorrow for the chemo because it had only been 13 days since his last dose. I told her that I wanted the Dr. called because if his blood work came back OK there was no reason to wait another day. She paged our oncologist's nurse. When she called back I told her the same thing, that I saw no reason that Marc could not have the chemo today; especially since she had told me his labs were entirely normal. She said that the oncologist and is nurse practitioner were both on vacation and she would have to contact the covering physician. About an hour later the nurse called me back stating that the covering physician agreed that it was OK to have the chemotherapy. Everything just seems like such an ordeal, nothing is simple.

When we got back to the treatment room, Marc tried to lie down on the bed (actually a modified cot). His feet hung at least a foot over the end of the bed! When he elevated the head of the bed, it bent at mid chest position instead of at the waist. He just couldn't handle it as any position made his abdominal discomfort worse and there was no way to get comfortable. While trying to change positions he pulled out the IV and it had to be restarted. Fortunately they got it in. I finally got him up in the chair and he was more comfortable. Of course being in such pain, his blood pressure rose. As elevated BP is normal with the Avastin, the nurse was hesitant to continue the infusion. I had brought extra BP medication with us as the same thing happened the last time, and gave Marc the medication. The nurse called our oncologist who told her to go ahead and complete the infusion, that I knew what to do and it would be OK. So the infusion continued and went well until about 15 minutes before it was to be complete. Marc started having more abdominal pain and insisted walking would help. So with the nurses blessing we walked. His BP was still high but Marc was doing OK so we completed the infusion. We got home had a late dinner and now Marc is resting now and we are hoping that the future chemo treatments are less eventful.

8/11/09
Marc had a little better night last night and then a dentist appointment this am. Of course his BP was up again after he sat there waiting on them to start his cleaning (they checked it after performing all of the X-rays). I again gave him some BP med and he rested while I got my teeth cleaned. By the time I was done and they got ready to start on Marc again, he was so uncomfortable that we had to reschedule the cleaning. We're home again now and he is resting. I am going to check his BP again soon and hopefully it will have gone down.

We are scheduled to go back to MD Anderson for his pre-placement consult for the portacath on 8/21. We still don't know when they will do the insertion. They have added anesthesia consults to the appointment lists so I suppose they will have to coordinate the insertion between anesthesia and surgery. Again, can't anything be simple anymore???

The care we get at MD Anderson is wonderful and we are very appreciative that we have the means to afford his treatment there. Had we stayed with the original oncologist, Marc would have been on the standard treatment with less chance for survival. This way we feel we have the best chance to "Beat the Beast".

Thanks to all who have given us the support and prayers, they are appreciated beyond words. I will try to post again next week.

Some good days, some bad but hanging in there!

It's been awhile since I posted anything so I will try to review the last 2 weeks now.

We went to MD Anderson for Marc's chemotherapy as scheduled but when we got there Marc was having such severe abdominal pain that they sent us to the emergency room for evaluation. After 24 hours there with lab, X-ray and CT scans they decided that Marc's problem was severe constipation. I know, we always knew he was full of it but now we have proof! The repeat CT scan did not even mention the umbilical hernia! While in ER it took 2 doses of IV dilaudid (a powerful pain medication) to relieve his pain. They discharged us at 9:30 the next morning and scheduled Marc to get chemo that afternoon at 5pm. They also gave Marc a prescription for morphine tablets to help with the pain. When they got ready to start the chemo, Marc's blood pressure was extremely high. Because the one of the side effects of the chemo is elevated blood pressure, they would not start the chemo until his BP was down. They had to call the nurse practitioner to come up to see him and gave him medication to bring down the BP. After 2 hours his BP had gone down enough to start the chemo. He tolerated the chemotherapy well and finished up a little after 10pm. So after leaving at 6pm on Sunday for an early Monday morning dose of chemotherapy we finally got home at midnight on Tuesday morning. We were both exhausted to say the least.

After we got home we started aggressively working on resolving the problem with constipation. It has not been pleasant for Marc and he is still having episodes of severe pain. But the episodes are getting fewer and further apart and less severe. They no longer bring him to tears but he still gets very uncomfortable. He has been a trooper through it all. The morphine was not controlling the pain so the Dr. prescribed a fentanyl patch which he changes every 72 hours and he takes the morphine for breakthrough pain.

The good news is that his speech has improved a little since getting the chemo. We were told that the chemo would decrease the inflammation in his brain and the improved speech is proof that this is happening. We are also starting to reduce his steroid dosage and hope to get down to 4mg of dexamethasone a day as a maintenance dose. I've now got him down to 8mg a day now with no troublesome side effects. That is very encouraging.

We return for the second dose of chemotherapy this Monday and are hoping that this trip to MD Anderson will be uneventful. Marc is now scheduled for his consult for the insertion of the portacath on August 21. They also scheduled him to have lab drawn that day so I don't know if they will do the procedure when we are there or schedule us to go back at a later date for the insertion. I am hoping that they can get everything done while we are there.

As you can see from the pictures, Marc still has his wonderful since of humor. He loves life and loves his family and we love him dearly. It is so difficult to see him suffer and we pray every day that the suffering will stop and he will heal.

I have returned to work 2 1/2 days a week now and have hired a home caregiver to stay with Marc while I am gone. They are very expensive so Steve is staying with Marc one day a week to give me a break in the expense. He is able to work from home so he works while he is here. Marc isn't thrilled about the home caregiver but does enjoy spending the time with Steve.

I will try to post more later this week after Marc's chemo is completed. I apologize to not posting regularly and will try to do better in the future.

MRI results lead to new treatment plan

We finally got the MRI results. Overall, compared to the last MRI done at MD Anderson, the MRI shows a little improvement, the area they have been watching is slightly smaller. That said, Marc's oncologist wants Marc to start IV chemotherapy. He will receive the chemo every two weeks. Because the MRI cannot rule out new tumor growth (the only way to do that is surgery which is not an option at this point) and there are new areas of inflammation the oncologist wants to start Marc on the 'Big Gun" treatment protocol. The drug used is called Avastin. It is used for many other types of tumor but has shown some success with glioblastoma. The major side effects of the drug are bleeding and/or clotting, and the other listed side effects include but are not limited to: dry mouth, cough, voice changes, loss of appetite, diarrhea, vomiting, constipation, mouth sores, nausea and headache. I just hope that Marc is able to tolerate the medication without any significant problems.

Marc will need a portacath insertion for the chemotherapy administration, however there is a waiting list for this procedure so we don't know when he will have that done. In the meantime, the dosage will be given through a regular IV. I just hope the IV team is as good as everything else at MDA is.

The good thing with the Avastin, it decreases inflammation so we will be able to decrease the steroid dosage some. Due to the severe problems that Marc has had each time the steroids were discontinued I am going to insist that we find the lowest possible dose to keep Marc on and not discontinue them. Decreasing the steroids should help some with the insomnia. I am praying it does because neither Marc, or me for that matter, just don't function well on 1 to 3 hours of sleep a night. I am going to try to start back to work again the first part of August and need to have adequate rest to perform my job duties. My work has been so good to me but I just cannot continue to be off work. I have put my coworkers in a bind by not being able to be at work when scheduled and it is not fair to them. I have contacted a home care agency and contracted with them to have a companion come to the house to stay with Marc while I am working. The problem is that it is very expensive, so I can't afford full-time home care. Steve is going to stay one day a week with Marc as he can work at home and can do his work from our home.

Marc continues to have the diffuse abdominal pain. His primary provider wants him to have a surgical consult but doesn't think surgery is a good option. The other problem is that with the new chemotherapy, surgical procedures are contraindicated for 28 days after receiving the Avastin.

I will continue to update the bog and let you all know how Marc tolerates the new treatment. Please continue to keep Marc in your prayers.

Test results . . .

We did get about a half inch of rain after I posted the last blog. We are in need of much more but do appreciate what we got!

Marc had a restless weekend. The effects of the steroids are beginning to appear again and take their toll. He doesn't sleep much at all now, maybe an hour or two here and there. He has taken to walking around the cul-de-sac in the middle of the night, sometimes two or three times between 10 and 5. So far tonight we have been out 3 times and it's only 2:30! He is using the walker when he takes these journeys but is a little unsteady in his gait so I join him. His lower legs and feet are beginning to swell some but not yet to the extent they have in the past. The only good thing is that his appetite has improved some. He seems to be in limbo with his speech and there has been little or no improvement since his discharge from the hospital. He still gets speech therapy twice a week as well as occupational and physical therapy.

The abdominal pain has not improved but he is managing to cope, only if he takes the pain medication regularly and even then it seems to only numb the pain a bit. The CT scan results were normal with an "incidental finding of a fat containing umbilical hernia". His PCP wants him to see a surgeon. I am afraid that a surgery at this time might be too much for him but Marc told me that it needed to "get fixed". At this point he is so ready to be pain free he will do just about anything to obtain relief. It is so difficult to see him suffer. It just breaks my heart to watch him try to get through the day, but he just keeps on going. He is such a fighter. I think there is no braver person in the world.

The MRI results are still pending. I called first thing this morning but haven't heard anything yet. We are both anxious to get the results. I will post something as soon as we hear something. Marc has another appointment with the oncologist next Tuesday, I just hope we hear something before then.

Status Update

As some of you know, for the last 2 months or so Marc has been plagued with intermittent, diffuse abdominal pain. It was difficult to assess as Marc couldn't verbalize the nature of the pain but just draw a line with his hand around his waist and back when asked to pinpoint the pain. The pain became more severe the last few days and I was finally able to get him in to the Dr. when he was having the pain. Always before I would tell the Drs. about it but when evaluated he wasn't having pain so they just chucked it up to gas, constipation, diet, etc. The last time he was hospitalized he even had an X-ray of his abdomen with negative results. When he was evaluated yesterday, the Dr. found a good sized umbilical hernia and recommended a CT scan of the abdomen to rule out any other pathology. He needed labs first to evaluate his kidney function before the radiologists would do the CT scan. Because we already had an appointment for a MRI at MD Anderson the next day (today) and he would have lab drawn there prior to the MRI the Dr. thought it was acceptable to wait and use the labs from there and do the CT early next week. Anyway, that was the plan when we left the Drs. office yesterday afternoon.

Well last evening and night the pain became more severe and constant. I put in a call the the nurse practitioner at MD Anderson early this morning to see if the CT scan could be done when he was there for the MRI. It was late in the morning before she got back to me. In the meantime I called his Dr. and was told to take Marc to the ER for evaluation. I agreed and by the time I got dressed and ready to go Marc had made up his mind that he was not going to the ER because he did not want to miss the MRI. I called the Drs. office back and they were able to schedule a CT to be done at 1pm today. We jumped in the car and went directly to Conroe where the CT was scheduled as a prep must be done 2 hours before the CT.

Marc was so uncomfortable, even with pain medication and a sedative that he asked that I be allowed to stay in the room with him while the CT was done. Once he was settled on the table we did some relaxation breathing and he was able to make it through the exam. After the exam we waited for 30 minutes for them to run a CD of the procedure so that if we had to go to the ER over the weekend I would have the disc and the test would not need to be repeated. We were cutting it pretty short because our appointment at MD Anderson was scheduled for 3pm. At 2:30 the clerk told me the system rebooted and they had to start the process of transferring the images again and it would be at least an hour before the disc would be ready. I made arrangements for Julie to pick up the disc later today and we headed to the Medical Center.

Poor Marc was miserable. We stopped by the house and got him a pain pill for the trip into Houston and he settled in for the ride. Our first stop at MD Anderson is always the lab, fortunately their phleblotomists are excellent as Marc has no veins left. Then it was time to give Marc more sedative so that he could make it through the MRI. He never used to be claustrophobic, but the frequent MRIs have done him in. By the time they got his IV started he was more relaxed and the pain had decreased a little. He again requested that I go in with him for the MRI. What an experience. I had never had an MRI nor been present in the room when one was being done. The opening in the machine is just big enough to squeeze Marc in. His arms are up on his chest and they place thin rubber pads on his sides so the arms are held up and don't rub on the sides. Ear plugs are placed in his ears (I am also given a set to use). A mask is placed over his face and the table he is lying on moves into the circular opening. There is just enough room for him to breathe without his chest and abdomen rubbing on the opening. Then the MRI starts - the noise is unbelievably loud, rumbling and pounding. The table even seems to vibrate from the sound. The test lasts about 25 minutes and he is expected to lie perfectly still the entire time. I now understand why he gets so anxious.

We are home now and will not have any results until Monday or Tuesday on either test. Marc is still very uncomfortable, he tried going to bed but was not able to get comfortable. He is now in his recliner and just started snoring. I am praying that he is able to sleep through the night and that we can manage the pain over the weekend; if not we will go to the ER .

I will post an update after we get the results of the tests. In the meantime, the weatherman gave us a 60% chance of rain tomorrow and we are hoping that he is right. I never thought I would wish for a rainy weekend but it has been so dry for so long we really need the rain. We wish you all a wonderful weekend.

In Limbo again!!!

A lot has happened since the last post. I have been so wrapped up in caring for Marc and arranging appointments and therapy I just haven't gotten to posting on Marc's progress.

After the last post Marc just started going down hill. He had more right sided weakness and had more difficulty participating in physical, speech and occupational therapy at the rehab facility. He didn't want to do anything but stay in bed. He wasn't eating. He became dehydrated and was given IV fluids. He seemed to perk up a little on Saturday when his sister and youngest brother came from Kansas for a visit but later that afternoon he got back into bed. His breathing became labored and is color changed to a dusky gray. He would not respond to me at all, even to painful stimuli. I was afraid that he was dying.

He was promptly transferred back to Memorial Hermann The Woodlands by ambulance. He was again evaluated and admitted.The first 2 days there he was in bed and didn't want to eat or drink. His brother and wife from Canyon Lake came to visit, so all of Marc's sibling with the exception of his oldest brother were here visiting him. I am a little foggy about everything that happened the next couple of days. Long story short, after multiple tests his EEG was "slow overall", the neurologist thought it might be from a postictal state from the seizure he had had the day before. His MRI was read as showing new tumor growth and an order was written for a neurosurgery consult. The neurosurgeon came in wanting to schedule surgery. I told him no, that I wanted to consult with Marc's oncologist at MD Anderson before anything was done. He promptly wrote an order discharging Marc from his service stating the family prefers treatment at MD Anderson. MD Anderson had no available beds at that time so we stayed where we were.

Marc seemed to perk up and was up walking in the hall the next day. He was doing so well that I asked that he be discharged to home and told them that I would make arrangements to see Marc's oncologist. The admitting Dr. agreed and wrote orders for discharge and home health evaluation in order to continue the therapy at home. He was discharged on Tuesday.

I scheduled an appointment for Tuesday, July 7 at MD Anderson. The oncologist pulled up the last 2 MRIs and reviewed the differences. The latest MRI showed some inflammation or tumor growth around the cavity of the original tumor and a small amount of growth on the area that they had been watching. He started telling us the options, one being a repeat surgery. I asked if they would insert more glial wafers if surgery is necessary. It was as if the light bulb turned on! The oncologist said that the inflammation surrounding the original cavity very well may be caused from the effects of the wafers and not from new tumor growth. He went on to say that they do not use the wafers at MD Anderson because the swelling that they cause makes it difficult to tell if the tumor has returned. He recommended a specialized MRI using the necrosis protocol which could help tell if the area was new tumor, dead tissue or just inflammation. He also recommended that Marc see the neurosurgeon just to discuss the possibility of surgery. He also said that he would probably change Marc's chemotherapy if we opted not to have the surgery. There are 2 options for chemo, the first is the 'big gun', is IV and given every 2 weeks. He said it works 70% of the time but that if the tumor does grow back the tumor is usually much more aggressive. The other chemo is a combination of 2 different drugs taken orally and daily. These drugs were used prior to Temador being used for first line treatment.

We saw the neurosurgeon on Thursday. He started the conversation stating that he wasn't going to recommend surgery at this time but wanted us to be aware of the possible complications if surgery was necessary. The most concerning complication is that the tumor is in the area that controls motor function and surgery could possibly cause paralysis. He stated that he was in agreement that the MRI be done before we determine the method of treatment.

I got a call last evening from the oncologist's nurse who said that the MRI had to be approved by radiology and that the radiologist who read the last MRI didn't feel that there was enough change to warrant the specialized MRI. He recommended a repeat MRI in 4 weeks. So now we are waiting again as the oncologist and neurosurgeon are discussing Marc's case and trying to determine what they think the best option is.

This whole process is trying our patience and is very frustrating. I work in the system and knew that there were always many roadblocks for patients to get through but did not realize the extent of the issues that must be dealt with. I certainly don't know the answers but there must be a better way!

For now Marc is doing well at home. I am staying home with him for now but must return to work soon. I will be working in the Conroe RMCHP seeing same day family planning patients once I go back. That will put me closer to home and will alleviate the issue of having to reschedule patients if I need to be out with Marc. I don't feel comfortable with him staying home alone because he cannot call for help if needed. Marc is furious that I will not leave him alone but I see no options at this point. I am trying to work out something that will satisfy both Marc and I.

Please continue to keep Marc in your prayers and I will post again once we figure out what is happening.

The Rehab fiasco

Well after haggling back and forth over the weekend, all day Monday and Tuesday morning; we decided to stay at the original facility. I was starting to feel uncomfortable with the pushiness of the other facility and every time I talked to them they would say something to the effect, "I worked there for 15 years and I am so glad I came here; they just don't do a good job there." I just don't think that it is good business practice to put down the competitor and it certainly is not ethical. I spoke to patients in this facility and they are all very happy with the care and say that they are especially happy with the therapy departments. I was told by one patient that "you shouldn't have come in on a weekend, the weekend staff only work weekends and don't usually know how everything works". Then she told me that the progress they have make with her in the therapy department is remarkable and that she couldn't be happier with the results. She said "they work you hard but it's worth it!" I asked Marc to make the final decision as to whether to change facilities and he opted to stay here.

I am very impressed with the therapy staff: occupational, physical and speech. They focus primarily on neurological problems and are very experienced. I especially liked the way they encouraged Marc when he really didn't want to continue. The nursing staff has come around and are very attentive to Marc now. I guess being the squeaky wheel helped some.

I am discouraged with Marc as he doesn't seem to have the drive that he has always had. It concerns me a great deal. I just think he is so tired of being sick that he would just rather lie in bed than get up and try to do anything. That just isn't Marc! If any of you out there have any ideas on how to perk him up I would appreciate any and all suggestions. I left today for about 4 hours, ran some errands, got a haircut and had lunch with an old friend. I think it was good for Marc not to have me hovering while he was in therapy. I am hoping that he will try a little harder if I am not there. I am going to go back to work on Thursday, so he will be here without anyone but the staff to watch over him during the day. I will continue to spend the nights here, so I will at least be with him a few hours every day. I think it also did me some good to get away for a while but I just can't help worrying about him while I am away. Care giving to a loved one is so difficult, it is so hard to be objective and you second guess all of your decisions. Marc was my rock and now I have to make decisions that may effect the outcome of this illness. I pray every day that I make the right decisions. I want more than anything for Marc to pull through this hurdle and not have any more obstacles.

I did talk to the Dr. here this afternoon and told him I would really like a full evaluation to figure out just why Marc is having the respiratory issues as he has never had any in the past. He is scheduled for a sleep study on July 1st and the staff pulmonologist will be evaluating him prior to that. I just hope they can figure out the cause of this last episode. We don't go back to MD Anderson until July 27 and 28 and will not have another MRI until the 27th. I pray that the MRI remains clear.

Thank all of you for your comments to the blog and the encouraging e-mails. I will try to post more later in the week.

Now in rehab . . . it seems like we're never going to get ahead!

Just a little history to update you on Marc's status. He had been active and was even mowing the yard with the riding mower. He was walking with his cane and getting around pretty good. I had gone back to work and everything seemed to be going well. About 2 weeks ago he started getting progressively weaker. The first week I would come home from work and find him in his recliner and he told me he just wasn't feeling good, that the muscles in his abdomen hurt like he had pulled them. I tried calling his Dr. on Friday morning and left several messages on the 'damned' voice mail system and no one ever called me back. That weekend I couldn't get him up to do anything, he would just go between his recliner and the bed and wouldn't eat. I called the neighbor and her daughter agreed to come to the house and stay with Marc every day while I worked. Although I felt much better having someone stay with Marc I still was uncomfortable with his failure to improve. He felt so bad that he didn't even want to go to speech therapy and that is one thing that always perked him up. I did finally get a hold of someone in his Dr's office on Monday and found that the Doc was out all week and they couldn't get him in until the 24th. They did offer me an appointment with the PA but I had seen her before and was not impressed.

So I was stuck with no Dr. and Marc needed to be seen. I called Steve's Dr. and they worked him in on Wednesday morning. After taking a thorough history and examining Marc the Doc felt Marc may have a systemic infection causing the extreme fatigue and weakness. Marc's blood pressure was very low and his oxygen saturation at the office was at 77%. That wasn't good. So the Doc sent us to the ER.

We were only in the ER for about 3 hours before we were admitted. All the testing revealed only a low Potassium level, a low white blood count and low O2 sats. So they gave him IV fluids, Potassium and put him on oxygen. A CT scan of his chest was negative as was an Xray of his abdomen. Physical therapy finally got him out of bed on Thursday afternoon and walked him about 20 feet using a walker. On Friday morning his labs were normal and he had walked a little more with physical therapy's assistance. Respiratory therapy assessed his oxygen sats while he was sleeping and the were all over the place, suggesting severe sleep apnea. We knew that from his last admission but Marc had refused a CPAP. The Dr. said he no longer needed to be hospitalized but did need oxygen all the time, needed a full evaluation for sleep apnea and felt that Marc would benefit from admission to a rehabilitation facility. I agreed, as I knew it would be too much for me to take care of him at home with minimal assistance from home health.

I was left to choose what facility to send Marc to. We have 2 facilities within 2 miles of our house, one is new and the other one has been here for at least 17 years (it was here when we moved to Texas). I asked if I would be able to stay with Marc and was told that I could stay in the older facility but in the new facility they asked family to go home at night; so I choose the older facility. I guess the place is probably OK but my first impressions were not good. I just did not have a good feeling about it. For example, on admission last night we were told that Marc would have physical therapy and speech therapy over the weekend but they gave me no information as to when the therapy would begin. Well this morning Marc was up early and wanted a shower, so I asked for towels and took him to the shower. The nurse brought me towels but did not offer to assist and did not tell me that the occupational therapist would be in to assess Marc's skill level (which included helping him take a shower). Well when the OT came in at 10 am and told me she was going to do her assessment on Marc and would start by taking him to the shower to see how he would do. I lost it! They had known all along that this is what would happen but didn't bother to tell me. I let it be known that I was not happy.

I was so upset that I called Steve to come stay with Marc and I took clothes home to wash. I then got on the internet and looked up the newer rehab facility and called them. They were more than happy to admit Marc there and offered me a tour "any time of the day or night". The supervisor I talked to put me in touch with the admissions supervisor. I was told that I needed to request that the Dr. (whom we had yet to see) write an order to have Reliant come to assess Marc so that he could be transferred. So I talked to Marc's nurse at Health South and was told I had to talk to the charge nurse. When I called the charge nurse she was not available. I then called the Reliant admissions supervisor and she contacted the liaison with Health South who then called me. She as much as told me I wasn't giving them a chance and they would not do anything. Well if you know me, that did not set well. I went to the Reliant facility and was given a tour. I met with the admission's supervisor, who came in on her day off to talk to me. Long story short, we have to wait until Monday morning and call the insurance company to get approval before we can do anything else.

When I got back, everyone was bending over backward to please me. The case manager came in from home to talk to me. I just told her "you have until Monday to change my mind". I don't think they will but I will give them a chance.

Needless to say, it has been a very frustrating experience and one I don't wish on anyone. I just pray that the rehab helps Marc and he gets back to where he has some independence again. I know that it has to be devastating for him and I just can't imagine how he feels. He still cannot say more that 3 or 4 words and can't get out the one word that would complete the sentence, so that leaves me guessing to what he is trying to say. He will try to write what he wants but usually leaves out key letters and I still don't know what he is trying to tell me. He then just gets so frustrated he says "I don't know" and will just quit trying.

I ask you to continue to pray for Marc's recovery. I will post again next week.

Good news!

Marc had an MRI on Friday and we went to MD Anderson on Tuesday. After a long weekend of stressing about the results we found out on Tuesday that there is NO TUMOR on the MRI. What a relief. We are so blessed to have all the prayers that have been sent our way. Thank you to everyone. He will have another MRI in 2 months.

We enjoyed a long Memorial weekend with family. Marcia's sister and her husband, Mona and Larry, were here visiting. Larry and Steve replaced the window in our master bedroom that Marc had all but removed back when he was doing better. They put up siding and trim and now all that is left is painting. It is wonderful to have that done and not have to worry about getting it done. We truly appreciated all of their work!

Steve and the grandkids were here most of the weekend. The grandkids got acquainted with Mona and Larry and swam until they were pooped. Steve barbecued each evening for us. The refrigerator is so full I won't have to cook for a week.

We don't go back to MD Anderson for another 2 months. I will post about every 2 weeks just to keep you updated on Marc's progress.

Happy Mother's Day to all

Marc and I would like to wish you all a very happy Mother's Day.

Marc is doing a little better. He still can't talk well and can only say a couple of words at a time. The biggest problem is that he will say something like "We need to" and can't get the most important word out. It does seem to be improving some, but much more slowly this time than on previous occasions. It is very frustrating for him and difficult for both of us. He is able to read the paper and says that he understands what he reads. He just seems to have a short circuit for expressing himself. He is still extremely tired, thanks again to the steroids and doesn't have a lot of stamina. The swelling in his lower legs, feet and abdomen has worsened again but fortunately it hasn't gotten as bad as it was in the past. He has gained 25 pounds since he was discharged from the hospital, all in fluid. I know it has to be uncomfortable.

I took Marc in today to have an ingrown toenail removed. I have been after him for years to have it done and he finally agreed. He say's it isn't bothering him tonight. His pain tolerance continues to amaze me.

I plan to return to work on Monday but will only be working half days for a while, at least until I feel Marc can call me if he needs help.

Please continue to keep Marc in your prayers.

Good report from MD Anderson today

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.

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.

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.

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.

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.

Two thumbs up!!!!

Well after two very very long days at MD Anderson we got good news. The latest MRI shows "no" new tumor growth! The Dr. said that he was petty sure what they saw with the last MRI was caused by the inflammation from the radiation and that the area of concern is smaller. So --- if it is tumor, it is shrinking and the chemo is working; if it is not tumor, the inflammation is improving. Either way it is good news. So the plan is to continue the chemotherapy just as we are, one week on and one week off and get another MRI in 2 months. Marc gets really tired during the week of chemo but perks up the week he is off . His blood work results have been good so far and as long as the blood tests come back good the chemo will remain the same.

The Dr. told us today that Marc had a long road ahead of him and there may be a lot of ups and downs. He also said that he felt good that the test results looked so good. We know it will be tough but we are in it for the long haul. With your prayers and support we know that Marc will ultimately have a good outcome and will "beat the beast".

Marc has plans to replace all of the windows in the house and at the same time put up hardy plank siding on all of the areas on the house that are not brick. He has big plans and I have no doubt that he will 'Git er done!' as he never leaves a project unfinished.

Not good news but not bad either

In other words we still don't know much. Ugh!! We finally got the results of last Friday's MRI and they are basically inconclusive. The MRI showed some inflammation in the area where the tumor was but the radiologist said "the enhancement pattern is nonspecific, aspects of which appear to represent radiation necrosis; however, tumor progression may coexist" and "this will serve as the baseline examination at MD Anderson, and close followup is recommended." The Dr. wants to repeat the MRI again in 1 month as he feels that if the inflammation is from the radiation, it should improve by then.

Meanwhile, Marc has started the high dose chemotherapy regimen which is the same medication that he was on during radiation therapy but in a much higher dose. The chemotherapy is really making him tired and he has not felt like doing anything. Needless to say he has not been back on the roof! His appetite is non-existent. But he gets a break every other week as he takes the medication for 7 days then off for 7 days. Hopefully that will help.

He had a small setback the day of the MRI. Just before the MRI was to start he had a seizure. He hadn't had one since he was hospitalized in November. Fortunately the anesthetist was right there and gave him IV medication to stop the seizure. Just like each seizure before his speech is effected and he has some weakness in his right side. He is walking with a cane most of the time now but is getting stronger, a little more each day. I have seen a lot of improvement since the weekend. I have been staying home with him this week. I was afraid he would fall and with his speech issues he would have difficulty calling anyone to help and I just felt I needed to be with him.

All that said, Marc still has a great attitude. He says he'll "beat the beast" but right now he's not sure what he's fighting. God has dealt him some horrific challenges but with faith, prayers and a positive outlook I know he will meet the challenge.

Still no news

Marc and I went to MD Anderson yesterday for lab and MRI; the MRI didn't get done. Marc has become very claustrophobic after having numerous MRI's and was not able to tolerate it this time. We saw the Dr. today and opted out of the clinical trial as the side effects of the drugs posed too much risk at this point. Marc can opt back in at any time but right now he just is not feeling well enough to participate. We are afraid the side effects might outweigh the benefits of the treatment. At this point we had 3 choices: 1 - continue the chemotherapy at the
standard dose, taking it 7 days a month; 2 - taking an increased dose of the standard chemotherapy and taking it 7 days on and 7 days off (this is the drug that he has previously taken but at a higher dose); or 3 - participating in the clinical trial. We chose to enter the treatment with the increased chemotherapy dose and may decide to enter a clinical trial at a later date.

Marc is scheduled to go back Thursday of this week for an anesthesia consult and will have the MRI on Friday using sedation so that he can get through the entire procedure. We are praying that the tumor hasn't come back. He seems to be having more problems with his speech of late but we are hoping that is because he is off the steroids and not from tumor growth. Friday's test will tell.

I will post again after we have the results of the MRI. Marc and I want to thank you for your continued prayers and support.

Done at last!!!!!

Radiation is done & what a relief it is!





Marc had no idea that the kids would be there and had a wonderful surprise when they arrived with posters in hand to congratulate him. Thirty-three treatments in all. The biggest surprise was when leaving after his treatment last Thursday the staff told Marc that "tomorrow will be your last treatment." We were under the impression that Tuesday, February 10th would be the last treatment, so we were quite shocked. Just to realize that it was nearly over was very emotional to say the least.

Marc had so much swelling all over his body and the mask would leave a webbed impression on his face after the treatment was completed. He said he didn't think that he could have managed any more of the treatments. He has gained 50 pounds in the last 4 weeks. His feet, ankles and legs are so swollen that his skin weeps . We have gone through all his socks, cutting them at the top so we can even get them on. That is a production in itself, it takes both of us just to get the socks pulled up. We went shopping tonight for some wider shoes and more socks. He said he didn't realize how much just squeezing into his shoes hurt his feet until he tried on the wider ones. It is very uncomfortable for Marc as the skin is very sensitive and it hurts to just touch his feet. I honestly don't know how he manages to even walk. The doctors all agree that the swelling is caused by the high doses of steroids he has been on to prevent edema in the brain at the site of the irradiation and say that once he finishes the steroids the swelling should resolve. We are slowly weaning him from the steroids but it will take another week before he is off them. The Dr. has also put him on some strong diuretics to try to help lessen the fluid buildup, but so far it doesn't seem to have helped much.

In some of the pictures, you will see a bell on the wall with a framed poem hanging next to it. After the last treatment the patient rings the bell 3 times symbolizing the diagnosis, the treatment and the new beginning. As Marc rang the bell I read the poem and managed to get about halfway through before I started crying. The other pictures are of Steve, Julie, Brayden, Annie, Abbie, Marc and I and of Marc being congratulated by the staff. The staff and other patients almost become a second family and there were many tears shed as Marc rang the bell.

The next step will start on March 2nd when we go back to MD Anderson for a followup MRI, a visit with the Dr. and to start the clinical trial. In the meantime, I will post weekly to let you know of Marc's progress and hopeful weight loss! Please continue to pray for Marc's full recovery.

Hello to all

Thank you for keeping up with the blog. We do appreciate the thoughts and prayers that come Marc's way.

Marc is keeping very busy doing things around the house. I think he does too much and doesn't rest enough but he is not one to sit around and never has been. He is so tired and weak from the radiation that he has a lot of trouble doing the things he wants to. He is getting anxious to be finished with the radiation treatments at which time he will be weaned from steroids. I am not sure which he wants to finish the most but I know he hates the way the steroids make him feel. There is not much time left as he will have his last treatment on February 10th.

He still is having a significant amount of swelling in both feet. He can just get his sneakers on but has to pull the tongue up and loosen the laces as much as he can. It looks like his feet are going to pop. It has to be uncomfortable but he doesn't complain.

I am married to a remarkable man. He is a fighter and a doer. He gets frustrated but that is understandable. I know I wouldn't be as brave as he is.

I will post pictures next week when he finishes his treatment. They have a celebration after each person finishes their treatment, it is really remarkable to see all the people cheering on the one who finishes.

God Bless you all!

Great News!!!

Marc and I had wonderful news today; the PET scan he had yesterday revealed no evidence of tumor growth! That means that, so far, the chemotherapy and radiation therapy are working. Marc says "I still have a monster on my back but now the outlook seems better." What a wonderful feeling it was to hear the news.

Overall everything is going well. Marc continues to go to speech therapy twice a week and his speech seems to improve every day. He still has some trouble expressing what he wants to say but I can see improvement every day. He is keeping busy doing things around the house and catching up on chores that needed to be done. The other day he said that his to do list just keeps getting longer.

We had a nice visit over the weekend from Marc's sister, younger brother, next to oldest brother and his wife. It was good to see them but the visit went by much to fast. It was wonderful to hear Marc and his siblings reminisce about old times.

On Sunday we celebrated our son, Steve's birthday and had a good time visiting with the kids and playing with the grandchildren. We look forward to seeing the grandchildren every weekend, they are such a joy!

Enough for now, I'll post more next week.