Radiation Update - 12/31/05

 
Just wanted to give everyone an update on Robin. In a nutshell, Robin just passed the halfway mark in her Radiation treatments last week with her 13th dose. We had a scare when they suspected a brain tumor, but the MRI brain scan showed no tumors. Details of the last three weeks follow.

Robin started radiation treatments on Tuesday, December 13th at UTMB in Galveston. Her coworkers (especially Cathy) have been shuttling Robin to the treatments since she cannot drive. I have gone with her on the days when she meets with the doctors. Robin is receiving radiation in ten fields (an unusually high number), and the treatments take about 30 minutes, if they are moving fast. She is receiving both Proton and Electron radiation.

Dr. Hatch allowed me to watch one of Robin's sessions so that I could tell her what was happening and what the machines looked like (since she still cannot see). Robin lays on her back on a table, with her head tilted back and her hands holding onto a bar above her head. For each field, the radiation technicians must set Robin in the correct position by small changes in the table location under the radiation delivery machine. They have laser beam "cross-hairs" shining on her body from the sides and from above, and they align with the target marks (tattooed) on her body. For some fields, they use a soft silicone mat that keeps the radiation from going too deep (I believe). I believe the proton beams are more focused, and they are scanned across the area of the field (like coloring an area in a coloring book). For (at least some of) the electron fields, they use a "template" (called a "bolus") that restricts the radiation area. The "nozzle" of the radiation delivery machine can rotate 360 degrees so that radiation can be delivered from below, in some of Robin's treatment fields. There is a picture of a machine like the one they use on Robin at

     http://en.wikipedia.org/wiki/Radiation_therapy 

If you click on the picture, it will enlarge.

To date, the side effects have not been terribly difficult to deal with. The most difficult has been that she vomited every afternoon at about 5:45-6:00 PM (during her ride home). Sineka, who drives Robin to and from work, pulls over to the side of the freeway, Robin pukes (partially on Sineka's running boards), then they meet me where I attempt to wipe off what I can. I suspect that the radiation is irritating Robin's esophagus, which is already weak due to a Hiatal Hernia and Gastroesophageal Reflux Disease (GERD). During the last week, between Christmas and New Years, Robin has not vomited, so maybe that is past us. Besides that side-effect, Robin is starting to have some discomfort in swallowing, and her arms are sore from maintaining her position for so long. All of these are expected, according to the doctors. The arms should get better as she gets used to the treatments, but the other side effects may get worse. The doctor also said that they expect skin irritation or burning and blistering to start in a week or two.

On Monday, December 19th, Doctor Hatch, Robin's radiation oncologist, thought that some of Robin's symptoms might indicate a brain tumor, so she ordered an MRI brain scan. The scan was done on Thursday, and it was negative (Thank God) showing only sinusitis (infection of sinuses in the head). They could see fluid in skull cavities behind the ears (somewhat unusual), but no tumors. As we left after the radiation treatment, the technicians were yelling, "Congratulations on your sinusitis!" I must say, we've never been so happy to have a bad sinus infection.

Regarding her eyesight, Robin is starting to get some minor improvement in the mornings. However, the radiation treatments require her to lay on her back, and that stirs up the blood, so she has absolutely no sight after the treatments. The next visit to the opthamologist will be on January 5th.

We had a wonderful Christmas this year. We were unable to adopt a family this year, as has been our tradition for many years, but we bought presents and groceries for the parents and unborn child of one family, and groceries for another family. On Christmas Eve, Robin and I had dinner and deserts (including Irish Coffee) with three other couples: Maddoxes, Buckmans, and the Nicholases. We started our Christmas celebration by going to Midnight Mass as a family. It was a little bit difficult for Robin because she could not play piano for Midnight Mass, but it did give Russell a chance to step up, and he did a great job. After opening presents (and more Irish Coffee), we went to Christmas dinner at the Couvillion's, with Maria and Steve Palacios. We all had a great time.

This year, we received many Christmas cards and Christmas letters from friends. Unfortunately, we did not send any this year, and we feel bad about it. After reading several of the Christmas letters recounting all the vacations and accomplishments of our friends, Robin commented, "I guess if we were to write a Christmas letter, it would be a real bummer!" Then, after reflecting a few moments, she completely changed her tune and said, "On the other hand, this year we have received many blessings and we have learned how many people love and care for us". We have been TRULY amazed by the many folks who have been providing us with love, prayers, and support of all kinds. We hardly knew many of you folks before this started over a year ago, and now we consider you to be part of our expanded family. Without going into an extended list, permit us to say that we thank God for the amazing blessings, miracles, and gifts we have received through you folks. And most of all, we thank God for YOU, who have turned a horrible disease into an irreplaceable experience of love and support. I do not know how we could have made it this far without you.

We will never forget you and all you have done for us.

Hope you had as wonderful a Christmas as we did,

Larry & Robin

p.s.—I just gotta mention one gift from our long-time friend, Terry. He sent us a case of toilet paper. But not just any toilet paper. This stuff, made completely from recycled paper, is called "ShitBeGone" toilet paper. We felt that this gift is not only useful, but it is a wish for the New Year. So as Robin moves into the final stage of her treatment, we hope all of you have Happy New Year!!! And may Robin's "ShitBeGone".

--LWB

Robin Starts Radiation - 12/13/05

 
Robin (finally) had her first radiation treatment on Tuesday, December 13th at UTMB in Galveston.

We first met her Radiation Oncologist, Dr. Hatch, on November 28th. Robin needed to have her Port (catheter) removed before treatments could start. Her surgeon, Dr. Mason, was able to take care of the surgery on Monday, December 5th, with no complications. Because Dr. Hatch felt Robin needed some recovery time, her first radiation treatment was rescheduled from the 7th to December 12th.

I went with Robin on the 12th because we wanted to discuss the treatment plan with Dr. Hatch. Almost as soon as we arrived, a nurse took Robin back for x-rays. I expected her to be back in 15-30 minutes. Boy, was I wrong. Three and a half hours (and a lot of worrying) later, they brought her out. Apparently, they were actually doing a detailed "simulation" and taking x-rays after (or before?) each stage of the treatment. Robin was required to lay down on a special table with her arms raised above her head. The table was designed to keep her body from moving and was very uncomfortable.

When we met with Dr. Hatch, she told us that this was the most extensive prescription she has ever written. This was an indication to us that Robin's treatment was going to be significantly more complex and extensive than most. Dr. Hatch discussed how serious Robin's cancer was. She implied that, although Robin's cancer was rated as stage 3 in the left breast and stage 2 in the right (out of 4), other doctors might have rated it as stage 4. She explained that the lymph nodes from the left side, which were cancer-free, had been cancerous prior to chemo. She also said that the inflammatory breast cancer (on the left side) affected the skin lymphatic, and that it was similar to the cancer on the right side (indicating it might be far metastasis (spreading) from the right side - NOT GOOD). She said that Robin's normal treatments would take about 30 minutes (when most patients are treated in 10-15 minutes). We discussed the probability of cancer recurrence. The doctor explained that, without radiation, the chance of recurrence in the left breast was about 30% and over 50% in the right breast. She said that radiation would reduce those probabilities by two-thirds.

The ride home was difficult. This was very hard news for Robin, and we spent a lot of time on Monday night discussing and crying about her situation. It was a rough night, but we were clear that her best chance of survival is to take all the radiation treatments that were recommended.

On Tuesday, at 11:00, she received her first radiation treatment. It took over an hour because they were still taking more x-rays. Dr. Hatch was there for the whole treatment (normally, the treatments are executed by technicians). When Robin got home, I looked her over and discovered they had written all over her chest. Her skin was red on the side of her neck (I guess she's a redneck). She also had some scrapes on the back of her skull, apparently from her wig. She asked if she could take the wig off, and was told that she must leave it on because that was the way the simulation was done. Hopefully, she will develop some calluses back there.

Regarding her eyesight, Robin cannot detect any improvement yet. The radiation treatments require her to lay on her back, and that stirs up the blood, so she has absolutely no sight after the treatments. The next visit to the opthamologist will be on December 28th.

Thank you all again for providing us with love, prayers, and support. The cards and notes that some of you have sent to Robin have had a significant positive impact on her morale. It might seem like a small thing, but you just don't realize how much they lift her spirits. Sometimes, she asks me to reread certain ones that touch her in a special way. Thanks, too, to our good friends who have been bringing us dinner. We would never have asked for it, but the meals have been a big help. Once again, we are indebted to our "Houston family" who have taken Robin out for pedicures, lunch, or shopping, or who helped us put up the Christmas tree and decorate for Christmas. And finally, thanks to Robin's friends at the Transitional Learning Center at Galveston, who have done so much to help her continue to work as she goes through this traumatic time in her life. We will never forget you folks.

Thanks again,
Larry & Robin