The maze after diagnosis

We are home, and settling into life as it is now, day by day. We have begun the adventure into the medical maze. It seems no matter how much you know about the system, you are still at a loss when you are thrown into it from this angle. I spent 4 hours on the phone just scheduling appointments with the doctors, physical therapy and speech therapy . We spent 3 hours at the Social Security office just finalizing the disability applications that had been previously completed on line. There is no normal now. We have everything written down on a calendar so we know when, where and what time to go to the next appointment. We are both a little overwhelmed but we are making it.

Marc has not lost his since of humor. When Annie, our 3 1/2 year old granddaughter asked him what was wrong and why he was in the hospital his reply was "I have brain damage". A little sick humor there. I am sure that Annie has gone to day care and told her friends and teachers that her Papa is brain damaged!

Thank you all for your prayers, calls and e-mails, they are both needed and appreciated. I will update the Blog again later this week.

Home and loving every minute of it!

God, it is good to be home. No matter how sick you are, you cannot rest in a hospital. Marc is adjusting as am I (Marcia is writing the blog at this time, Julie has done a wonderful job but will be out of pocket for a while). If you want to e-mail Marc & I - my e-mail is marciab@swbell.net . We are grateful for all of the friends and for the prayers. Thank you from the bottom of our hearts!

Home at last!

At 9am today Marc said he was leaving the hospital by 10; there was no doubt that he would. Marcia had the Dr. paged to come in to write his discharge orders and, all said and done, they didn't get out of there until 12:30pm. Steve had gone to the house and mowed the yard so it was ship shape when they got home.

The pathology report came back this morning and the news isn't good, the report confirmed that the lesion is Astrocytoma Grade IV, typed as Glioblastoma Multiforme (GBM). Marc will start radiation and chemotherapy in about 3 weeks, it will be 5 days a week for 4 to 8 weeks. They will start outpatient speech and physical therapy next week. They will be busy scheduling all of the followup Dr. visits for the following week. We are all going to try to live as normal of life as we can and are optomistic that the treatment will be effective and that Marc will have few side effects from the treatment.

The blog entries will be once or twice a week now that we are home from the hospital but if anything changes we will post it. Marc, Marcia, Steve and Julie thank all of you for your support and prayers and ask that you continue to keep us in your daily prayers.

Post Op Day 3 Continued

We are finally in a room. The first thing Marc did was get into the shower, he said he liked Marcia's sponge baths but enough was enough. LOL. We are in room 4245 at Memorial Hermann in The Woodlands. Marc is hoping to get out and go home tomorrow. We are not so sure and are thinking maybe Sunday would be better.

We still haven't heard anything about the biopsy, so we continue to hurry up and wait! More later . . .

Day 3 Post Op

Not much to report yet today...Marc was able to get a good night sleep (or the best you can in a hospital) after Marcia gave the "orders" to leave him be for the night. She was awoken this morning to Marc up and moving furniture around the room at 5:15 AM! He is ready to go, claiming that if he isn't moved from ICU by 3 PM, he is walking out! Of course we won't let that happen but he is ready to get the show on the road! They have decided that he is strong enough to move to a "normal" room instead of the step down unit which is great news! There is a possibility that he could be going home in the next few days and we are all looking forward to that!

Still no news on the biopsy. We hope to have news today, but it may be the beginning of next week.

That is about it for now - we will post more later as there is more to post.

Post Op day 2 Continued

Today was a frustrating day for Marc. His Dr. was in first thing this morning and told him that he was doing so well that he could be moved from ICU to the step-down unit so that he could still be monitored but get up and around more and even walk in the hallways. He was excited about getting out of this room! The problem was they didn't have any available beds so as of 9 p.m. he is still in ICU.

Today he got up and put on his sweat pants and T-shirt, walked around the room, then the halls with PT and then decided that he needed to wash his hair and get it trimmed around the surgery site. The sink in ICU is like one in an airplane, he bent over and with a little help from Marcia got his hair washed. Then Marcia trimmed his hair so the 'comb-over' effect was gone.

He has had a great nurse the last 2 days, she would change his dressing and personalize it. The first said "This is my brain on drugs. Any questions?" and the one after the shampoo and trim said "Bull's Eye" with an oval marking around the length of the incision. She had comebacks as fast as Marc could give them out. She came in once when Marc was taking off his heart monitor and BP cuff and asked him where he thought he was going; when he told her that he was going to walk out to the lobby she firmly reminded him that he was still in ICU. She did however, concede and walked with him so he could walk Steve, Julie and Marcia to the elevator.

He has now been up for over 15 hours and when Marcia asked if he was ready to go to bed he said no. Stay tuned for more tomorrow.

Day 2 Post-op

Marc continues to do well. He has been sitting up in the chair since 5:50 am, walked with little assistance of physical therapy and is back on a regular diet. He looked at his incision today and said that he looked like half a 'Frankenstein'. I think he would look good with his head shaved but thats a big step. Marc has asked that I attach a picture of his incision - don't be frightened, but it is real! It looks like he will be bumped out of ICU today and moved to the regular rooms, then a couple more days, we think, before he is discharged to home. We are still waiting on the pathology report but hope to have it by Friday.