Update

Our weekend was cool and it's definitely early Fall in New England. Keith and Paula, Jack’s brother and sister-in-law were here from Tennessee. We thoroughly enjoyed their visit. Jack had Keith out pruning a wisteria and assorted other tasks he normally does. I had Paula helping me keep up with laundry, paperwork (volumes of the stuff), and laughing and crying our way through a warm and wonderful weekend.

I received a call from MGH (MA General Hospital) on Sunday afternoon to let me know that we should not come in on Monday. The radiation machine needed a part that was being flown in from CA. Tuesday would be the start date. The woman that called was Linda Mario, manager of “the machine”. I told her about the Friday disaster. She assured me with her in charge of his treatments things would go VERY smoothly. She said when you arrive on Tuesday, have me paged (believe me, I did).

On Saturday, I called a neurosurgeon that I have known for several years that lives in Winchester. His name is Rees Cosgrove. Dr. Cosgrove used to be at MGH and is now chairman of neurosurgery at Lahey Clinic, a well known and excellent private health care facility in the next town, Burlington. They have a similar model to Mayo Clinic. When I told Dr. Cosgrove of our MGH experience, he was horrified. He told me to call his nurse and he would see us on Wednesday. We have our appointment at 5 PM.

Dr. Cosgrove has a very warm, caring manner about himself, which has been missing at MGH for the most part. He wanted me to get Jack’s MRI and CT scans. He told me to get the receptionist to help me with this task when we went for education. He also said Jack should begin the treatment at MGH (radiation and first round of chemo) and then transfer to him if we choose. We don’t want to interrupt treatment now. By the way, when I called his nurse, she said, I have been waiting for your call. You will need to call registration – I did – she said I have been waiting for your call. She said I will need to call to confirm the appointment – I did – I have been waiting for your call. I almost dropped the phone each time.

On Monday, we went to the oncology center at MGH to receive the education on the chemo we needed. When we checked in, I asked the receptionist about getting Jack’s MRI, CT records. She didn’t know how to do this request but told me to ask the nurse’s assistant (you know what is coming at this point). In the interim, the lab tech calls back for his blood draw. She puts on latex gloves. Jack has latex sensitivity. There was a big sign on his hospital room when he was hospitalized. I tell this woman about his sensitivity, she changes gloves. I go to the desk and tell them they need to add this to his record. The woman says, it is there, and it was in large capital letters at the top of the record. I keep forgetting people don’t know how to read anymore.

Moving along, the nurse’s assistant comes to get us to transfer us to an exam room. I asked him about the scans and the need of copies. He has no idea but I should ask the nurse. The nurse comes in – she is the research nurse. Jack had agreed to participate in demographic and biomarker studies. Since it had been more than 2 weeks since we signed the last set, we had to sign everything again. Also, we would need to come in by 7:30 AM on Tuesday for a blood draw for the biomarker study. I said he just had his blood drawn. Oh, she said, they weren’t the correct test tubes for this study. I asked, couldn’t he do it today? The paperwork could never get processed that quickly (this one I believed). I then asked her about the copies of scans. She didn’t know how to do that but we could ask the nurse who would be educating us on the chemo. Her name is Michele.

In the interim, Dr. Plotkin and Nurse Michele came. I voiced my concerns about how disorganized and disconcerting everything has been. I suggested that someone might produce a page of what to expect from this ordeal in terms of treatment, who does what, when, and where. Dr. Plotkin said that I should send a letter to their executive director with that suggestion. I probably will. Oh later, we were informed that Jack could indeed have his blood drawn now for the study – a small miracle for which I was thankful.

During the education on the chemo that we now know we take each day, Michele informed us about how important it is that we see her after the 3rd week of treatment. We needed to schedule it before we left. The education was well done, except for the time she told us to take the medication (2 hours prior to the radiation). We were moved to a cubicle with another person to schedule the 3 week out appointment. The woman says, Michele is on vacation that week. I asked, what about the Friday before? Oh, neither nurse is here that day. Surprise, surprise!!! Michele comes by to see if we are getting scheduled; we inform her she is on vacation; oh, I forgot!!!! So, 4.5 weeks after treatment, we have our appointment.

I did ask Michele about the scans. She told us we needed to go to a sub-basement in the main building to order these. MGH is a huge campus. The good news is that Jack and I like to walk so we got some walking in. We were told it would take 3-4 days to retrieve this info. We got to the sub-basement and met this fabulous lady who had a million dollar smile, a wonderful sense of humor, and loved her job. She said it would be 1-2 days, but she would see what she could do. She was most pleasant, probably underpaid but sees her job as a ministry. She loved quoting scripture. How the Lord provides in the most amazing places. We are so blessed with His presence. This lady calls 3 hours later to inform us it is in the mail. I told her if I had a million dollars, I would give it to her. I told her she was the sunshine in our day.