In the Beginning

Several months ago, Steve began to have trouble finding the words he wanted to use. It seemed a bit unusual, but he was stressed at work, and he was getting older. Doesn't that kind of thing happen when you get older? One day, when he was having his usual lunch with a colleague, Steve Cox, our Steve couldn't say the words "iced tea". Steve Cox urged Steve to see his doctor about it. One evening when I was on the phone with Terry, Steve asked me about it. He said it had happened a few times, usually with several weeks in between. Fortunately, he was going to his doctor for a routine blood check that week and he told his doctor about it.

The doctor scheduled Steve for a CT scan on Friday, November 18, 2011.  Friday morning, Steve had his CT scan of the brain. That afternoon he and Terry picked up the key to their new house. They were moving a mile or two over in Santa Clarita to a larger home with a bedroom for each of the boys and some elbow room in the family room and a living room and separate dining room. Their phone landline was switched to the new house but their furniture wasn't being moved until Sunday. Later that night, Terry checked messages on the landline, "You have been scheduled Monday for an MRI and an afternoon appointment with the neurologist".

The nightmare begins.

Sunday the movers come and Steve and Terry move into their wonderful new house. They do a great job getting all the essentials unpacked although boxes are still scattered about. There's also a problem with the internet (isn't there always?) so no research is happening on their end.

Monday, Steve discovers there was a spot on the CT in the left temporal lobe, near the speech center of the brain. He has his MRI and meets with the neurologist. He is scheduled for another CT, this time with contrast, and an appointment with Dr. Sanchez, a neurosurgeon for Tuesday. Chrissy, Terry's sister, goes with Steve and Terry to that appointment. Later, they tell me the neurosurgeon doesn't want to do surgery because it's likely to make more consequences, like losing speech or becoming paralyzed on the right side of his body and that it won't make any difference in his life expectancy. It won't help and it might hurt. This is the surgeon telling them that so it must be true. After all, surgeons like to operate, don't they? He also says the tumor looks "busy" and is likely a primary tumor, based on how it presents (Not a tumor from another location which metastasized).

Wednesday, is a day of moving things in the house. Unfortunately, Steve has been having headaches and he was given Vicodin (5 mg codeine plus acetaminophen) which helps. Steve tries not to take too much though and he had pain as the pills wear off.

Thursday is Thanksgiving. They celebrate with Terry's family in their new house.

Gary and I drive down to visit Friday and stay the weekend. We help unpack some boxes and have a nice visit. Steve has obvious word finding difficulties but can get his meaning across by circling around a word until we guess it. He also has trouble completing some sentences, especially when his pain pills wear off and he rubs his forehead and closes his eyes. He takes short time outs when it's too loud. He does some work around the house, but only in short bursts. His attention is sometimes elsewhere. He lets us know he is having trouble concentrating.

Monday and Tuesday he has a repeat MRI and a third CT. He has appointments every day. We hear that the tumor has already grown from six days ago when compared to the previous MRI.

Those of us with internet and the desire to know what's going on have been looking up brain tumors. We learn a lot and realize there is a huge difference in prognosis depending on the type of cells and the aggressiveness, or grade of the tumor. The Bad One, a glioblastoma multiforme has a life expectancy of only 12 months. We worry that this is the kind Steve has because of the tumor probably being primary and because it is "busy" and because it has already grown a visible amount in only six days.

Wednesday, Steve, Terry and Lesley (Steve's and my sister) meet with the radiation oncologist, Dr. Miller. He is the next hope of trying to get rid of the tumor by radiation treatments. There is something called a Gamma Knife which uses radiation to kill tumor cells, right? He tells them he can't do anything unless he knows what type of tumor it is, so Steve has to have a biopsy. He tells them that Steve is likely to only live 12 to 14 months. Everyone is devastated. We're very upset. How can that be? Steve is so NICE! It's not fair! He's so young. He has young boys to raise. They just bought a new house. How will Terry pay for it if Steve is gone? He's got things to do. Places to go. Kids to raise!! Steve says his goal is to live to 65 to retirement age, so he can complete work.

Life is not fair sometimes. My little brother seems to have a time limit. I suppose we all do, and we can't know if something will befall us at any minute and we might be gone without any warning or any chance to say goodbye, but, geez Louise, it's wrong to think he may die before us, and possibly as soon as a year. We feel deflated.

Thursday, Steve and Terry don't have any doctors appointments or scans. They buy themselves a new mattress. Steve jokes about not needing the expensive mattress since it lasts years longer than the cheaper mattress. He and Terry decide to live life as if he will still be around, optimistically, and they buy the better mattress. They have lunch out at a favorite place, then a quiet evening home with the boys.

Friday, I arrive back at their house in the morning. I drive them to Kaiser in Woodland Hills (where we were raised) for Steve's biopsy to be done by Dr. Sanchez. We arrive on time about 11:30. Terry stays with Steve until 1:30 when he's taken off to CT scan. We hear later that this CT is used to program the machine which will take the actual tissue samples. He has a halo placed around his head, with local anesthesia and something that starts to make Steve loopy, Versaid? They take two tissue samples with the computer guided needle and send those to pathology. They wait an hour and a half while a discussion goes on about if more samples are needed and where to take them. They take a total of five samples. Steve is awake through the whole thing. He says everyone is really nice and they check on him, hold his hand while they wait for pathology to be completed. Terry, Greg, Chrissy and I wait hours in the crummy little waiting room. Lesley joins us later. About 7:00. Dr. Sanchez comes in and tells us great news. One, the initial pathology samples indicate the tumor seems to be grade 2, not the grade 4 we had feared and two, the black area on the MRI which had grown almost 3 cm over 6 days was likely edema (swelling) mixed with debris, dead cells, etc. and that did not expand over the 4 days between the last scans. He thinks the dexamethasone corticosteroid has slowed it's expansion and should keep it under control.

Yippee!!! Those with smart phones with internet access look up the grade 2 gliomas. We find one, the oliogodendroglioma has a life expectancy of 12 to 16 Years! What a change in possibilities. Steve can watch his boys grow up after all! The tumor size is being controlled by the steroids. The grade 2 grows slower so we have some time to find treatment options! There is hope after all.

We visit Steve in recovery. He looks great. He has a bandage, not more than two inches square behind his left ear and some red sores on his forehead from the halo (they look like horns were there, hehe). Steve breezed through his recovery. About 11:00 pm he transfers to the ICU for the night. Terry stays with him. She had been told there are cots she can use but, it turns out they were all being used. She tried to sleep on a chair and the floor, but neither of them got any sleep with all the interruptions and goings-on. Steve HATED the foley catheter. He said it was worse than the brain surgery.

I picked them up Saturday morning and took them home. They were both exhausted and they took a 4 hour nap. Their wonderful neighbor, Wendy, had taken care of Nathan and Adam and she and Terry's mom had cleaned the house on Friday. Wendy emptied boxes in the garage and got the shelves filled with their stuff.

Saturday and Sunday went well, only complicated by constipation which comes from the codeine. It seems the previous week, around Monday, Steve's pain pills were increased from Vicodin to Norco (10 mg codeine and acetaminophen). Steve had a belly ache and rumbles. We went to the store to buy him stuff to help. It took a few days, but eventually his system got to working again. Steve also complained about the discomfort from the foley for a short while. Poor boy. On the up side, he thought his language skills were better than before with fewer missing words. He pretty much completed all his own sentences, too. We attributed that to the steroids working and diminishing the edema (which pressed on Broca's area, the speech center). Many folks came to help. Steve's bosses from work have been super great, reassuring Steve as best they can about work and helping with insurance and disability. Colleagues and friends have sent gifts and made phone calls. Everyone has been supportive. Friends are planning to help put up the Christmas lights soon. Nathan and I put up some decorations inside the house.

Monday was an uneventful day with Terry dealing with insurance documents and scheduling the next doctor's appointments. Steve tried to keep his system working and puttered around the house.

That takes us up to today.