Well October is almost over and it was a very hectic month. Diana received 10 radiation treatments on her lower back, pelvis and right femur . One every day (M-F) for two weeks. The final radiation treatment was on Oct 10. Because of the location that was being treated on Diana’s body, they had to radiate through Diana’s intestine. This caused Diana to be sick with nausea while getting radiation.
Following her last radiation treatment on October 11 – we met with the Radiation Doctor – Dr, Kara Bucci (a lady doctor) Diana reported improvement in her back and leg pain but was still having headaches and neck pain. Dr. Bucci decided to do a MRI of the brain. Diana had previously had an MRI of the brain in June which showed nothing except the bumps on her scull. Those bumps are cancer in the bone the same as in her leg , shoulder , hip and leg. The brain MRI was scheduled for Friday, October 13.
In the meantime, we met with Diana’s pain doctor – also a female – Dr. K (last name too long to spell) – (who by the way did her internship at Mass Medical in Worcester, MA – Diana’s home town for those of you who did not know that trivia). Dr. K has changed Diana’s medication for pain. She is now wearing a patch that gets changed every 3 days – Duragesic – The patch is supplemented with pain pills on an as needed basis – Hydrocodone. The past two weeks since radiation, Diana has had less pain in her back and leg and has used less of the pain pills.
As we had a short lull between doctor appointments, we decided to take a quick trip to the Dallas area. Diana’s old women’s golf association was creating a cookbook to raise money for a charity to which Diana had submitted some recipes. The SWGA was having a lunch tasting party on Tuesday Oct. 17 at a member’s house where each person would prepare and bring one of their submitted recipes. Diana had submitted a recipe for Kibbe – a Lebanese food made from lamb. She spent the weekend making her Kibbe. We also scheduled visits for both of us to our Dentist for cleanings and checkups. Since we had Gaylord Texan free rooms, we would stay there. We departed on Monday morning and went directly to the dentist for Diana’s appointment. Once she was done we checked into the hotel and met some friends for an early dinner at the hotel. Of course we had had to take a walk to see her Koi which we did after dinner. Finally off to bed after a fun but very tiring day,
On Tuesday, I dropped Diana off at the party and went to my dental appointment after which I returned to pick up Diana. She had a great time. She saw many of her friends that had not seen for a long time. It was a great day for Diana. The lunch party only lasted a couple of hours but once again Diana climbed the mountain – she participated in the party, a goal she had set for herself. We returned to the hotel and rested in our room. Later that evening we went to the Riverwalk restaurant as we had done the evening before to see her Koi. Diana was really proud of her Koi and so happy to see them in the great environment they were now living. On Wednesday morning, we drove back to Katy. On Thursday, we had appointments with the radiation and pain doctors so there was not much time for rest.
Diana had her brain MRI 2 weeks ago – initially (a week after the MRI test) when we met with Dr. Bucci last week, we were told that there were no abnormalities seen in the brain MRI. On Thursday, October 26, I got a phone call from Dr. Bucci. She wanted to meet with Diana and discuss the MRI asap. We went to the clinic to meet with her Friday morning. She told us that upon further investigation of Diana’s brain MRI – they had detected Leptomeningeal disease. There is a thin membrane the goes around the brain and spinal cord. Inside the membrane there is flowing fluid. Well on the right side of her brain they had detected cancer inside the membrane which is called Leptomeningeal disease. Obviously, not good news. What a blow, especially after being told that the MRI was normal.
After I initially spoke with Dr. Bucci on Thursday and she told me of the discovery of Leptomeningeal disease, I went to the internet to find out what it was. What I found was not good. The disease spreads very rapidly and unless caught in its early days, it is a killer. I did not share this information with Diana but found it very difficult to accept. I understood why time was of the essence for Dr. Bucci to start radiation.
Dr. Bucci started radiation immediately on Friday afternoon. Diana had to have a mask made of her head, which we did Friday morning. When you get radiation, they mark the body with magic markers so they can point the radiation machines. Her stomach and legs still have the lines from that radiation. They use a marker pen and it will eventually wear away. Well – they don’t want to draw lines on the face/head so they create the mask which gets the marks. The mask is also used to hold the head in place on the table she lies on so the head will not move while radiation is being applied.
Friday afternoon we went back to MD-Anderson for Diana’s first brain radiation treatment. We went to the clinic this morning Saturday for her second treatment. Diana has now had 2 radiation treatments of the brain (Friday & Saturday). She will receive a total of 10 treatments of radiation to her brain. Normally the clinic is closed on Saturday and does not see handle out patients. However, Dr. Bucci wanted Diana to get her second radiation treatment as soon as possible, so an exception was made and Diana received her second radiation treatment Saturday morning.
Next week will be a busy week. Not only is Diana to receive a radiation treatment each day, but on Monday (Oct 30) she will have blood, x-ray and CT scan tests. On Wednesday, we will meet with Dr. Blumenschein to discuss the results and new plan of action for treatment going forward.
Diana has been very fatigued since the start of her radiation treatments. She is spending most of the day in bed other than trips to MD Anderson. During her first 10 radiation treatments – the nausea associated with the radiation just wore her out. Fortunately, she has not (nor are any expected) had any nausea with the brain radiation. Her face is very red and swollen, but no other symptoms at this time. However, Dr. Bucci has told Diana that radiating her brain will cause her to lose her hair on that side of her head. If that happens, Diana and I have an agreement that if she lost her hair I would shave mine off too. So the next time you see us, we will both probably be wearing hats.
Needless to say, but this latest development has been difficult upon us. However, Diana is very strong and determined to keep fighting this disease. Hopefully the results of next weeks tests will be more favorable. The mental stress of this situation is wearing on me – I can only imagine what it is doing to Diana.
Thanks for your thoughts and prayers. I hope all is well with all of you.