Recovering From Surgery and Preparing for the Next Steps

Well, Steve breezed through surgery better than anyone expected. He was home Friday after Wednesday brain surgery with all visible tumor removed (how great was that?). From what I gathered, hearing snippets from the family, Steve was only on narcotic pain medicine through Saturday as it made him feel confused and sleepy and then Tylenol was able to handle his pain. He felt better every day and had frequent visitors the following week.  I understand there is no change in his speech so he manages very well with only rare missing words and certainly near enough to normal that many people wouldn't notice. When I talk to him on the phone, he sounds great. He had the whole week after surgery doctor-free so he spent time with his family and resting and went out to dinner to celebrate our sister, Lesley's birthday.

Last Tuesday, January 17th, it was back to the doctor's. First to Dr. Jethro Hu (does anyone else hear Jethro Tull music when I say that?), the neuro-oncologist at Cedars-Sinai. They talked about the next steps for Steve. There is an experimental trial where, if you qualify, your own blood is taken and made into a vaccine to fight your own tumor. This is to help keep new tumors from regrowing at the tumor site. They took Steve's blood to test for this HLA factor to see if he qualified.  They talked about chemotherapy and radiation therapy and the likely schedule with and without the vaccine trial. Dr. Hu also gave Steve permission to drive his car again. He drove part of the way home that day.... the first time in a while! One step closer to normalcy! Dr. Hu discouraged Steve from going back to work until some time after the chemo and radiation treatments are completed. He also began to taper the dosage of Dexamethasone steroid. Every few days he will diminish the dose from 8mg/day down to zero. We loved the Dexamethasone in the beginning because it controlled the swelling inside the brain, but now there is no more tumor to generate swelling and so it is not needed. The side effects of a puffy face have appeared on Steve, so he is pleased to not need it any longer.

Radiation Schedule
Then they went to meet Dr. Nancy Ellerbroeck, the radiologist at Henry Mayo Hospital. She used to work at Cedars-Sinai and has the respect of the radiologists there (who referred Steve to her), but she is located much closer to Steve's house. She will be in charge of Steve's radiation therapy. The way I understand it, first they make a mould of Steve's head, called a mask. This will hold his head still and in the exact same place for each radiation session. Steve is scheduled for next Wednesday to have this mask made.  Then they make a "phantom" head to test this new mask with to see if the radiation will be in the right place (mapping the brain again). That takes about another week, so Steve's radiation therapy will start the following week. He will go five days a week to Henry Mayo Hospital, near his house. The session will take about 15 minutes. He has the mask placed and lies still and is irradiated for 7-8 minutes at a time. This lasts for six weeks. The Registered Nurse, Grace, will do most of the work and Dr. Ellerbroeck will see Steve once a week. This is the maximum level of radiation safely allowed for Steve. There is no further radiation scheduled after this six weeks.

Friday, we got the results of the HLA blood test. Steve did NOT have the right kind of marker/HLA thingy to qualify for the vaccine trial. He won't be able to participate in this particular trial. Later on, if the tumor regrows (and I understand they almost always do), he may be able to enroll in other trials for recurrent tumors.  We're a little disappointed, but, what can you do? His tumor or blood markers weren't the right kind so there is no choice but to continue moving forward with conventional chemo and radiation. Maybe we can "sour grapes" the situation by saying it probably wouldn't have helped anyway. Plus, with this experiment, only 2/3 of the subjects receive the live vaccine, 1/3 receive placebo, so he may not have received it at all even if he had the right blood.

Chemotherapy Schedule
So, the chemotherapy schedule will be concurrent with the radiation schedule. He will take a Temodar pill once a day, everyday, for 6 weeks. He will follow up with Dr. Hu every 2-3 weeks during this time frame. At the end of those 42 days, he will have one month off. They will do a follow up MRI during that month.  Afterwards, there will be a maintenance chemotherapy schedule of 5 pills a month on and off for a year with MRIs interspersed every other month. I'm sure everything is subject to change depending upon actual findings. Stay tuned :)

On a brighter note,  the new family room couch, love seat and reclining chair ordered months ago arrived yesterday. Terry likes them. The couch reclines and has a built in cup holder. I'm looking forward to seeing them.

Also, Steve went to a new family physician since they are no longer Kaiser members, a Dr. Thomas (did I get that right?) Cox, who has been Lesley's doctor for many years. Steve has lost 35 pounds since this started. Yikes! What a way to lose weight. Dr. Cox requested Steve's hospital records so he can make proper adjustment to Steve's diabetes medications. They will hear back from him in about a week with any changes to his medications. Steve went back on the treadmill as soon as the surgeon  gave him permission after surgery. Steve continues eating a healthy diet with very few sweets.

(By the way, Terry says she has lost 19 pounds since Steve's diagnosis. The Stress Diet really works, but I can't recommend it.)

Last night, according to Terry, Steve awoke about 2 am with cold shivers, lasting about 10 minutes. He was confused for just a minute, probably from a dream (something about a sandwich). It's probably nothing, maybe the steroid taper, maybe Steve's fighting a cold that was going around, maybe some medication.  He's been taking Tylenol PM to help sleep through the night. Sometimes we worry too much. Needless to say, Terry watches those little things and we talk about them. Steve's had no trouble today. But, if it happens again Terry will be on the phone to the doctor. Worry warts!

Next week, Steve plans to drive out to work to have lunch with his friends. I bet it feels good to plan a normal activity.

Steve's fiftieth birthday is coming up soon, the first week in February. Maybe he'll be well enough for a good party, if it doesn't last too long. What to you think?