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.