Went to MD Anderson today

We went to MD Anderson today and what an impressive place! They are very organized and efficient. Marc was seen first by the nurse, then the fellow and then the MD (who is the head of the neuro/oncology department). They reviewed Marc's records, MRI/CT films and pathology slides. The diagnosis was confirmed and they agreed with the treatment plan as set up by our local oncologist and radiation oncologist. They also said that because the tumor is a very fast growing type, they would recommend further treatment after the standard treatment is completed. They urged us to consider entering a clinical trial, for which he is eligible. It is a trial using the standard chemotherapy in increased dosages either alone or combined with other medications, including thalamide, accutane and celebrex. There are eight combinations of the drugs that are being studied. The protocol that he will be placed under will be selected by computer. By using the combinations of medications they are hoping to arrest further growth of the tumor by basically cutting off the blood supply to the tumor. The participation is voluntary. I think that we will probably enter the trial. It would start by repeating an MRI 3 weeks after the standard treatment is completed, then placing him on the protocol selected by the computer. The medications are all oral so we would only have to drive into Houston once every 4 weeks for evaluation. We would be able to have the blood tests drawn locally and they would coordinate the care with our local physicians.

Marc doesn't really want to have to drive into Houston but since the appointments would be monthly rather than daily, he is leaning toward going for the treatment. Today the traffic was terrible. I don't think it is the drive that bothers him as much as it is me driving! He has turned into a great backseat driver. The decision is ultimately Marc's but I told him I want us to celebrate our 50th anniversary, plus many more after that, and that I would like him to do everything possible to beat this! That means he needs to stick around another 19 plus years! So I am encouraging him to participate in the studies.

We start the radiation and chemotherapy next week so I will be adding to the blog then. In the meantime, Marc and I would like to wish you all a very happy Thanksgiving.

Slowly improving

Being home is good. Marc is slowly improving but still very uncomfortable and not resting well. He has a lot of swelling in the right side of his head and face and it really bothers him. I am going to remove some or all of Marc's staples tonight to see if that doesn't help him rest better.

We went to the radiation oncologist yesterday. They put a mask, kind of like Jason in the horror stories, except it is a formed mesh that covers his head and face and he has to lie very still while they do a CT scan which takes about 20 minutes. Well, he didn't tolerate it well at all yesterday so we went back today. The Dr. gave him a prescription for a tranquilizer to take about an hour before the procedure and told him he would probably need to take it every time because when they start the radiation therapy he will be in the mask each time he has a treatment. It went better today. They do the initial scan to determine the exact area to be radiated.

Next week will be a very busy week for us. Monday Marc has appointments with his oncologist and his primary care provider. Tuesday we go to MD Anderson in the morning and see the neurosurgeon in the afternoon. It seems like we have something on Wednesday too but I will have to check the calendar to be sure.

I will post more next week after our appointment with MD Anderson.

Home at last!

We just got home and boy is it nice to be here. Marc just cannot rest at the hospital, so needless to say, if he doesn't rest, neither do I.

I will be busy scheduling followup Dr. appointments, etc. I have no doubt that Marc will take advantage of his recliner and finally get some much needed and uninterrupted rest.

I will post more after I get everything scheduled and when we know more about where we go and when.

Please continue to keep Marc in your prayers.

One more day - Marc says no more!!!

We waited all day expecting to be discharged but it didn't happen. Marc is still having quite a bit of pain, some problems with his blood pressure and had another CT scan this morning. Fortunately it came back OK and showed no additional swelling or bleeding. The Docs just want to monitor him another day, be sure the medications are adjusted properly and make sure that he is doing well prior to discharge.

Marc and I were both disappointed. It is so hard for Marc to rest well in here. He is wide awake at 3 am every morning. He is typically an early riser but not that early!

I will post again tomorrow evening, and with any luck it will be from home.

Another day in hospital

Marc is not happy about it but they want him to spend another day in the hospital. They left in his central line but it is no longer connected to the IV so he is able to move around without draging the IV pole with him. He is up more, we actually just got back from a walk and even went outside for a bit. It pretty much wore Marc out but he won't admit it.

I'll post more later when we know more.

Third post-op day

Marc is progressing a little every day but disappointed that he hasn't improved as fast after this surgery as he did with the first one. He is up out of bed and walking some now and was moved out of ICU this afternoon. He is in room 4214. He is hoping to go home tomorrow but still has the IV. He has gotten rid of the catheter and was very glad to see that go. He still has quite a few headaches, especially when he stands up or moves suddenly but is taking the pain medications more regularly now which is helping a lot.

The grandkids got to come up to visit tonight, it sure was good to see them.

More tomorrow . . .

Second post-op day

Marc had a better night last night, a little restless but much better than the night before, or so I am told. Steve insisted that I go home last night to try to sleep and he stayed with Marc. I went home about 11 and returned about 5:30 and slept like a rock!

Today has been a better day. Marc has gotten up into the chair twice and is still sitting up after dinner tonight. He seems a little surprised that he hasn't progressed as quickly as he did with the first surgery and is disappointed that he isn't doing more. I think he has make remarkable progress. He is having more pain than he had with the last surgery but again, this was a much more extensive surgery. The pain is improving and is generally controlled with oral medications now. He is hoping to walk in the hall tomorrow and still would like to get home as soon as possible. Hopefully we will get home on Sunday, the sooner the better!

More tomorrow . . .

Rough night but better day!

Well Marc had a rough night last night. He seemed to be in a lot of pain and the morphine just didn't seem to help much. He was restless and even tried to get out of bed during the night. He slept for about an hour all night. He got clear liquids for breakfast and lunch today and a soft diet for dinner. He didn't eat much but he was sure glad to get some fluids in besides those in the IVs. His appetite is returning as Steve is on his way to the hospital now with a special order strawberry milkshake for Marc. He was able to sit on the edge of the bed, much to the nurses dismay, as he was still ordered to be on bedrest and was able to stand beside the bed while his bed linens were changed. He wants up more and will pester them until they give in, this I know first hand! He is planning on walking in the hall tomorrow.

I saw his incision for the first time today and realize now why he has been so uncomfortable. The incision is about 9 inches long and crescent shaped extending from in front of his ear lobe to his mid frontal scalp. It is a very impressive incision.

Steve showed up with more than just a strawberry milk shake; he now has much less hair. Brayden helped Steve with a trim tonight and now his head is as bald as a baby's behind! I have included a picture of my two special boys, they are quite a pair.

We are hoping for a quieter and more restful night tonight and a better day tomorrow.

Post-op note - 11/12/08

Marc made it through surgery fine. He was in surgery from 7 am to 1:30 pm and finally got to the ICU around 2:30. They let us in about 3 pm. He is still really groggy and seems to be in a lot more pain with this surgery than he was last. According to the neurosurgeon the post-op CT scan looked good. We are staying with him, except when they kick us out of ICU, 6pm to 8pm and 6 am to 8am, and will post any changes when they occur. Please continue to keep Marc in your prayers.

More in the morning . . .

Ugh!

Surgery was rescheduled to Wednesday morning at 7 a.m. because the Dr. had an emergency surgery come in. When the Dr. came in at 2:30 and said it would be Wednesday morning Marc said "Great, I'm going to get a cheeseburger!" So we will let you all know something Wednesday after the surgery. If all goes well, he should be out of surgery and in a room by 1 p.m.

Until Wednesday . . .

Getting ready for round 2

Marc said that I had to get rid of the picture on the header of the blog and put something that looked better, so here it is. We are getting ready to head to the hospital for the second surgery and will be glad when it is over! Surgery is supposed to start at 11:45, that is if they are on time.

Will update the blog after surgery. . .

Scheduling consult for second opinion at MD Anderson

For those of you who have asked, we have been moving forward on seeing someone at MD Anderson for a second opinion on the treatment of the GBM. Our son, Steve, has a friend who's father is a neurosurgeon in Ohio and he has a friend who is a neurosurgeon at MD Anderson. Well, through their diligent efforts, we have made progress on getting an appointment to confirm that the treatment plan we have is a good one. Today I requested that the pathology tissue samples be sent to MD Anderson for review. After MD Anderson receives the samples, we can schedule an appointment. I have all of the records and MRI films that we will take for the appointment and I am to call next week after Marc is discharged to schedule the appointment. We think we are going in the right direction but it never hurts to double check. The oncologist that we have trained at MD Anderson and follows their protocols, so we feel pretty good about it; on the otherhand we are glad to get an appointment to either confirm or dispute the treatment plan.

More on Monday after the surgery . . .

Encouraging news

Marc & I saw the radiation oncologist today and were very encouraged. He told us that Marc has several things in his favor: his age, the fact that he regained the strength in the right side back so quickly after surgery, the fact that his speech continues to improve and most importantly that the surgeon resected the entire tumor and didn't just take part of it. He told us that Marc has a very good chance of beating this tumor. He uses image guided radiation therapy which uses CT imaging to guide the smallest amout of radiation to the area needed. The plan is to have 7 weeks, 5 days a week of radiation/chemo. The chemo is by tablet and he will take 1 tablet daily on each day that he has radiation therapy, then continue the chemo 1 day a week for 1 year. We are scheduled to begin the radiation/chemo regimen on December 1st.

The radiation oncologist recommended that Marc have the pituitary tumor removed prior to starting the radiation therapy. He felt that having the surgery now would give him the best chance of restoring his vision as now he has no central vision, just peripheral vision. The vision loss is due to the pituitary tumor's pressure on the optic chiasm (see the above diagram to help visualize the problem).

Long story short, Marc is scheduled to have the pituitary tumor removed on Monday morning next week. He should be in ICU for about 3 days, although he hopes it will be less.

Please continue to keep Marc in your prayers. I will again post daily while we are in the hospital.

More on Monday . . .

Getting more active, or should I say doing too much

We had a good weekend, much better than the last two weekends! Marc is feeling better and is having trouble sitting still. I have to watch him to keep him from doing things he shouldn't be doing. He carried the plywood that we had covered the windows with during Hurricane Ike out to the curb! I can't take my eyes off him for one minute. How he did it without me knowing it is beyond me. You can bet that I am watching him closer now.

We were able to go to our Grandson Brayden's baseball game on Saturday. It was nice to get out and enjoy the game (his team won). We were also able to join a group of friends for dinner Saturday evening. We had been scheduled to go camping with them this weekend; since that wasn't possible it was good to see everyone.

We see the oncologist tomorrow, so we hope to know more about the plan for treatment. We also hope to schedule an appointment at MD Anderson for a second opinion sometime later this week. We want to make sure that we know all of the available options and do everything we can to beat this!

I've included a picture of Marc, Marcia and the three grandchildren taken on Halloween.

More later . . .