Post #9: Dec. 19-20, hospital, shopping, condos, liver enzymes
We returned to the hospital the next day (Friday, Dec. 19) for my post surgery MRI scan, a blood draw. and consult by Dr. Nicholas and his staff. This day at the hospital, went a lot better for me. The MRI went well without incident and so did the blood draw. Jean Arzbaecher, RN (essentially, the nurse coordinator for the doctors' clinical trial) went through the entire clinical trial consent form with us, step by step, explaining along the way how the whole thing works. In summary, it begins with 6 straight weeks of the standard, FDA-approved, GBM treatments that would have taken place anywhere else in the U.S. This includes what would have taken place in Fort Myers or in Indy. The schedule is for focused beam radiation to the tumor area Monday-Friday and 7 days/week, oral chemotherapy (Temodar pills) taken at night an hour after taking an anti-emetic medication (Compazine pill) an hour before bedtime.
My next appointment was scheduled by their office for Wednesday, December 24th at noon when we would meet the Lead Investigator, Dr. Nicholas, himself. After that appointment, we were free to return home to Indy for about a week. We had planned to spend the weekend hunting for a condo in downtown Chicago. It was an onerous task, driving around the city, looking and deciding on the neighborhoods and how much to spend per month. Also, trudging through icy slush of the city and in the brutally cold weather, we needed to get some warmer clothes and dry, over-the-ankle boots. So, shopping was also on our list for the weekend. We both purchased long down coats at the Michigan Ave shops that could protect us down to -50 deg F.
Then, serendipity stepped in for us. Our good friends from Indianapolis, Elaine and Bob Sandy were also in Chicago on December 19th attending a wedding very near our hotel. We met with Elaine around 6 PM and found out that also at the wedding; she had heard information from a “friend of a friend” that someone was trying to rent a condo near the Lincoln Park area for a very good price. We totally lucked out. It was just what we needed. Later, we spoke with the owner and arranged for a look-see over the weekend. It turned out to be a perfect solution for us. The price was right, the location was great, and the apartment included a reserved, indoor parking spot and a 24 hour doorman. The rental arrangement was informal (without a lease) and the owner told us we could have it for as long as we wished, renting month to month. On Sunday, December 21st we visited the apartment and I wrote a check for the first month. Our search was over. What a relief.
The only downer came when Jean Arzbaecher from Dr. Nicholas’ office called my cell (late on Dec. 19) to let me know that my liver enzymes were higher than normal and needed to come down for my final acceptance in the clinical trial. My levels were somewhere over 120. Most likely, this increase in liver enzymes was due to the heavy-duty medications that I am taking. Dilantin, evidently is a potential culprit. In addition, Jean advised me to get off any Tylenol, Ibuprofen, and all alcohol and also switched me from the anti-convulsive Dilantin to Keppra, which is less likely to cause this effect. Also, they lowered my DEX dose from 6 mg TID to 4 mg TID. The cutoff value for trial entry was 70 and Dr. Nicholas said that it is FDA mandate without any flexibility. I made the switches in meds and began hoping for the best.
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