Robin: Modern-Day Job? - 11/30/05

 
Quite a bit has happened in the two weeks since November 14th when I last provided an update. Most of it has not been good. I told some friends at Church that I was beginning to feel like the wife of Job in the Bible. Well, Robin said that makes her Job! We have seen (I guess I should say, "I have seen") more doctors in the last ten days than Heinz has little green pickles. Let me explain.

At my last writing, Robin's right eye had just bled, making her blind in both eyes. Her left eye, which had bled a few weeks earlier, was starting to clear a bit, but was still too muddy to treat. A couple of days after I wrote that, her left eye bled again, taking away the gains she had made. Before, she could read 2-inch letters written with a wide magic marker. After this relapse, she could no longer read anything.

Then she got a cold the weekend before Thanksgiving. And it was a bad one. Because of her depressed immune system, and her history of pneumonia, I demanded she go to the doctor on Monday. She did not put up much of a fight. Her physician gave her some antibiotics and took some blood (and other bodily fluids) for tests. His nurse called on Tuesday to say that he wanted to see her again on Wednesday before Thanksgiving weekend.

Tuesday, Robin had to get her post-Chemo CT Scan to see if there had been any new developments. They filled her with radioactive fluids from every opening in her body I believe. She also had to have a blood test that day for her Gastroenterologist, because one of her medications for Crohn's disease can cause a build-up of toxins.

Wednesday, we returned to her internist, who said she had infections showing in her throat culture and in her urine. So he took more blood for additional tests, took chest X-rays, and changed the antibiotics (based on the earlier test results).

Thursday was Thanksgiving, and we celebrated in our usual way: going to Mass, then joining with the Couvillions for food and fellowship. They have sons near John's age, and we all get along well. I got a fried turkey from the KofCs (John and I helped - mostly John), and I cooked a pork loin roast. They provided the place and the side dishes. We had a great time. We have an annual tradition of playing "Balderdash" on TG night. We all had a good time, eating, watching football, and playing games. There were no doctors that day, nor on Friday, Saturday, or Sunday!!! (I did have a job interview on Friday with Boeing --- Good news!) On Sunday, towards the end of Mass, Robin was anointed in the Sacrament of the Sick. It was good to have the whole parish community involved and to feel their presence and fervent prayers for Robin's recovery.

On Monday, November 28th, Robin met her radiation oncologist, Dr. Hatch, and her associate, Dr. Berilgen. They had not received all of Robin's test reports, so they depended greatly on our verbal descriptions for their estimate of Robin's treatment course. Before meeting them, we thought we were on the downhill slide into the end game. Radiation sounded like a cake walk compared to the sickness and after-effects of Chemo. All we had heard was possible areas of "bad sunburn" on the skin and extreme exhaustion or weakness. It didn't sound too tough. Then Dr. Hatch explained that, based upon incomplete data, it appeared that Robin would need radiation on both sides. On each side, there were four areas to be radiated: the internal mammary chain (in the center of the chest), the Axillas (under-arm lymph nodes), the SupraClavicular (front shoulder area lymph nodes), and the chest walls. Then she explained that, if she received all the recommended treatments, she would double the chance of lymphedema (swelling of the arms due to problems with lymphatic fluid flow), "kill" part of her lungs (reducing lung capacity by about 33%), damage her heart muscle (similar to damage caused by a heart attack), and scar some other muscles. This was pretty scary stuff. They told her she would need to have her porto-cath removed from her chest (this is where the chemo went in) so that it would not interfere with the radiation.

Well, after all that good news, then she had another appointment with her opthamologist. So we drove from Galveston to downtown Houston to that appointment. It turns out that Robin's right eye is better and almost as good as the left one was on 11/14. We learned that the retina was still intact (good news), and we just needed to wait until the eyes cleared enough so that it was safe to do laser treatments again. He told us to come back in a month (after Christmas). BUMMER!!!

Tuesday, was incredibly busy. Robin arranged with her surgeon to get the port removed on Monday (December 5th). We returned to Robin's internist and got the test results. The news was good because the chest X-ray was clear. Her doctor discussed the radiation therapy with us a bit and (although he could not make any recommendation) he said that we needed to weigh the probabilities AND the weight of the consequences when we made our decisions regarding how much radiation Robin should receive. It was certainly helpful discussing it with him. Then we had to go to Deke Slayton Cancer Center to get more blood tests and see Robin's Oncologist, Dr. McClure. We learned that the CT Scans showed nothing new (Good). Dr. McClure discussed the radiation treatments with us and she explained that improvements in equipment and techniques would mitigate the risks associated with the radiation treatments. She said the Chemo that Robin had just completed was harder on the heart, and Robin survived that. This was helpful to our decision process. Finally, at 5:00, we had to run to St. John's hospital to fetch medical reports, slides, and specimens for the radiation treatment team. We got home at almost 7:00PM (just in time for my Pastoral Council meeting at church).

Today is Wednesday, November 30th. Robin took her medical data to UTMB for the radiation treatment team, and she had more CT Scans and the "simulation" done. In the simulation, they put Robin into position for her treatments and aligned the instruments. They take pictures and "tattoo" her body with small dots for aiming lasers to ensure they have correct alignment. If all goes well, she will get pre-op on Friday at St. John's Hospital, then have the surgery to get the port removed on Monday morning. Then on Wednesday, December 7th, she will begin radiation treatments, five days a week for six weeks. With luck, her cancer treatments will be complete in mid-January.

Once again, thank you to all who are providing us with love, prayers, and support. Robin has been receiving cards in the mail from some of you, and I cannot tell you how much it means to her as I describe and read the card to her, and especially when I read her the personal notes that you have written in them. Her whole face lights up when I tell her that she received cards in the mail. Special thanks, too, to our friends who have been bringing us food. Especially this week, with all the doctor appointments and driving back and forth between Galveston and Houston, I have not really had time to cook, so it has been very helpful. Finally, I must thank Robin's support group at her job. Cathy, who is responsible for administrative support for the whole group, has been instrumental in helping Robin function without sight. I'm sure it is frustrating at times for her (I know it is for me), but Cathy has made a real difference for Robin. There are many others, too. Sineka, who drives Robin to work, her co-case managers, Lori and Gerry, John, who modified Robin's computer so she can be somewhat functional with it, and many others. Robin has described many small kind actions that folks have done for her that help her to lead as normal a life as possible under the circumstances. Please be assured that, even though I do not know all the names, Robin (and I) will never forget your kindness and support.

Thanks again,
Larry & Robin