First MRIs Done --- 09-26-2010

On Tuesday (9/21), Robin restarted the scans required for restaging her cancer. Restaging is the reassessment of the extent of the cancer, and it needs to be completed before Robin can start treatment at MDAnderson. Because of her claustrophobia, Robin had to be knocked out (receive general anesthesia). So we had to be there at 6:15 AM so they could get Robin prepared, which meant I had to get up at 3:00 AM to get Robin ready to leave on time. Connie, Robin's attendant, decided to go with us, and she was a big help in getting Robin ready. Connie is like a drill sergeant, so Robin does what Connie tells her to do. On the other hand, if I tell Robin to do something, she argues, negotiates, refuses, etc. (I wasn't told that Connie was going, so that's why I had to get up at 3:00). We arrived at MDA a little early because the MRI procedure is done in the "main building", and we didn’t know our way around. I really didn't expect the valet parking to be running at that time of the morning, either, but they have 24 hour valet parking at the main building. When we arrived at the MRI office, the lights were out.

We didn't have to wait long before the staff showed up and got us busy with paperwork. Robin was back in the anesthesia prep room before 7:00. The anesthesiologist was worried about giving Robin general anesthesia because Robin "upchucked" on the ride downtown. However, after talking to Robin, she decided that she could give Robin the anesthesia if Robin had a breathing tube down her throat. At that point, they sent me to the waiting room. After an hour or so, Connie and I were moved to the recovery waiting room, because general anesthesia requires recovery after the procedure. About 10:00, they let us go back to stay with Robin as she continued to wake up.

By about 11:30, Robin was finally awake enough and her vital signs were good enough to let her go home. Robin was starving, since she lost her dinner and had nothing to eat yet, so we stopped for breakfast before going home. We got home and got Robin settled in bed about 1:30. Connie went home and Robin and I both took a nap. For the next few days, it was hard to keep Robin awake for long. About Friday, she seemed to be back to normal (whatever that is).

This weekend, Robin seems to be doing fairly well. Her blood appears to be very thin; when she checks her blood sugar, she bleeds longer than usual. Robin's right eye bled again this week; apparently, pretty heavily. She is totally blind in the right eye now, but her left eye is fairly clear. Also, since Robin has a catheter, she doesn't have to get up to go to the bathroom; so she seldom gets up from her bed. She seems to be considerably weaker as a result. Other than these issues, she is feeling better and eating well.

Monday, 9/27, Robin gets her blood Coumadin levels checked (INR). These affect her clotting. On Friday, 10/1, the day after her birthday, Robin gets her second MRI, this time, a scan of her spine. After the MRI, Robin will get CT and PET scans on October 22nd, and then she meets her Oncologist on Monday, October 25th to get her reports and to have her cancer "restaged." The pace is SO incredibly s l o w. Robin's cancer is so aggressive that the waiting without treatment is frustrating and frightening. What kind of damage is being done while we are waiting?

Once more, I wanted to remind Robin's friends and family that Robin's birthday is this Thursday, on September 30th. I am hoping everyone who reads this will send Robin a birthday card, especially humorous ones. It will do wonders to raise her spirits! I have suggested the cards be addressed using the theme of "Fighter" this year. This year has shown how tough Robin is and what a fighter she has been, and I think we should celebrate it. Use your imagination, old comic books, history books, etc. Address the envelope to Dragon Lady Robin Burns, or The Virago, Robin, or Wonder Woman. Be creative. I hope you will all participate to bring some brightness to Robin on this special occasion. (Email me if you need the address; I don't want to publish it here).

As always, I ask that you keep Robin and her mother, Johnnie, in your thoughts and prayers. This has been a tough month, and the next few weeks will not be much better, but with God's help, we will press forward.

We continue to pray for all of you each day, and we thank God for the gift you have been to us.

Love,

                  --- Larry, Robin, & John

Robin Update: Starting Over Again --- 09-19-2010

As you may recall, Robin's father, Hal Gilbert, passed away on September 10th from a type of cancer called "Multiple Myeloma;" a cancer that starts in plasma cells and affects the bones and other organs. By the time they diagnosed it, the cancer had done so much damage that his only options would only extend the inevitable and leave him sick and in pain. So he chose to forgo the chemo and allow the disease to finish what it started. Hal was a good Christian gentleman, and we have no doubts that he is joined with God's saints in Heaven. We have been blessed to know and love him.

Since Robin was too ill to travel to North Carolina, our son, John went to the funeral in our place. Robin was in touch with her mother, Johnnie, and other family members and friends throughout the funeral preparations. Robin helped to select the music for the funeral, and she wrote a eulogy for John read at the funeral. On the night before the funeral, Robin and I held a traditional rosary at our home while the "viewing" was taking place in Lincolnton. The next day, Monday, September 13th, at the same time as Hal's funeral, we held a Liturgy of the Word at Robin's bedside, and we prayed some of the prayers from the Catholic Funeral Rite. It was not the same as being there and being surrounded by family and friends, but it did provide us with a connection with them, and it provided us with some level of closure. Please keep our family in your prayers, especially Robin's mom, Johnnie. She and Hal were married for over sixty years, so Johnnie will be dealing with many changes and many decisions over the next few months.

With respect to Robin's health, she finished her IV antibiotics on September 13th, the day of the funeral. She still has the catheter, which allows us both to sleep a little better, although we are concerned about how long it must be left in, and if there might be side effects from continued use. On Tuesday, 9/14, I took Robin to see her Primary Care Physician to get prescriptions refilled and follow-up after the infection. Other than a mild fever, Robin seemed to be doing well. There was no explanation for the fever, but the doctor was not overly concerned because it was so low-grade. They checked her urine for "bugs" and found none.

Starting on Tuesday, September 21st, Robin is scheduled to start the scans required before she can start treatment at MDAnderson. She has MRIs scheduled for 9/21 and 10/01, and because of her claustrophobia, Robin requires general anesthesia (to be knocked out) each time. This turns the 30 minute scans into an all day affair, with nausea and illness for the next two days afterward. After the MRIs, Robin will get CT and PET scans on October 22nd, and then meets her Oncologist on Monday, October 25th to get her reports and to have her cancer "restaged." It seems crazy that it takes so long to get all this done, but I guess they have to wait a certain time for recovery after general anesthesia before the next test. All these tests need to be completed before Robin can get into a clinical trial. The fact that her cancer is so aggressive makes the waiting without treatment more than just frustrating; it is troubling to think about the damage that might be done while we are waiting.

Before I close, I wanted to remind Robin's friends that Robin has a birthday coming on September 30th. Last year, the theme was "Royalty", and your birthday cards were addressed to Queen Robin, Her Highness, Princess, Empress, etc. You folks were SO creative, and the number of cards she received was a real show of support that raised her spirits. I would like to suggest a new theme of "Fighter" this year for her birthday. This year has shown how tough Robin is and what a fighter she has been, and I think we should celebrate it. Use your imagination, old comic books, history books, etc. Address the envelope to Dragon Lady Robin Burns, or The Virago, Robin, or Wonder Woman. Be creative. I hope you will ALL participate to bring some brightness to Robin on this special occasion. (Email me if you need the address; I don't want to publish it here).

As always, I ask that you keep Robin and her mother, Johnnie, in your thoughts and prayers. This has been a tough month, and the next few weeks will not be much better, but with God's help, we will press forward.

We continue to pray for all of you each day, and we thank God for the gift you have been to us.

Love,

                  --- Larry, Robin, & John

Robin's Father, Hal Gilbert, Passed Away

Robin's father, Hal Gilbert, passed away this afternoon. A short time ago, he was diagnosed with "Multiple Myeloma," a cancer that starts in plasma cells and affects the bones and other organs. He has now joined God's Saints, with his son, Larry, in Heaven.

At this point, everyone in Robin's immediate family has had Cancer. Her mother, Johnnie had breast cancer (as did several of Johnnie's sisters). Robin's brother, Larry, died from a rare type of blood cancer just a couple of years ago. His son, Matthew, had Hodgkin's lymphoma, and now, Robin's dad is gone from cancer.

Hal was an exceptional man who made his God and his family as top two priorities. He has always been an inspiration to me from our first meeting. He was a hard working Christian gentleman. Although he did not have a lot of formal schooling, he was a person from whom I always learned something new. I will never forget how Hal and I would get up in the mornings before anyone else, and he would coach me over a cup of coffee, especially on money matters, on his common sense approach to life. When I hear about someone who is having debt problems, I thank God for Hal Gilbert.

Robin is too ill to travel to North Carolina to be with her mother, Johnnie, for the funeral. So I am staying home with her and John is planning to go in our place.

Please keep our family in your prayers as we deal with our grief.

Love,

                  --- Larry, Robin, & John