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

Robin Loses Her Eyesight - 11/14/05

Robin has now lost her sight in the right eye. You may recall that she lost her vision in her left eye on September 11th, so she is effectively blind as of November 12th. Although there is no direct proof, the sudden onset of bleeding inside her eyes is believed to be a secondary effect of the chemo after-effects combined with Robin's diabetes. We saw her Ophthalmologist on Monday (November 14th), and he said that we must give the right eye time to clear some of the blood before he can continue laser surgery to reduce the chance of recurrence. Her left eye was looking better, but is still too cloudy for the laser procedure. He hopes to be able to start on the left eye in two weeks if enough of the blood is gone. The upshot is that Robin's vision SHOULD clear over the next couple of months (if there is no more bleeding), but she will be effectively blind for a while.

Besides the loss of eyesight, the rash that she experienced after the third Chemo came back last week after her final Chemo (received on Tuesday, November 1st). In addition, she developed swelling and blisters on her feet (on the sides and the back of her foot), even though she was not wearing shoes that rubbed her feet. The rash and blisters are believed to be direct effect of the chemo. She saw her oncologist on Friday (November 11th) and was prescribed steroids for the rash, antibiotics for the broken blisters, and anti-inflammatory drugs for the swelling.

Robin should be having a CT Scan done this week or next to see if they can see any Cancer. Then she will start radiation therapy for six weeks, five days a week.

Thanks again for your kind thoughts and prayers. Special thanks to the Choir of St. Frances Cabrini. Gloria Blancas made a beautiful satin and velvet pillow for Robin with a chiffon bow attached, and the whole Choir wrote little notes and signed a card which Gloria delivered to Robin on Sunday. Of course, Robin couldn't see it, but she could feel the various textures of the fabrics and see some color with the left eye. The card contained a beautiful poem explaining the choices of fabrics and colors to remind her of the love of God, of her family in Christ at St. Frances, and of all her family and friends around the world. It was a big boost to Robin, who was really feeling bad on Sunday.

If you are interested, Robin could really use your support now, as her spirit has been very low from the blindness. This was a big blow to her normally positive outlook. She was feeling really good last week because Chemo was finished, then, "WHAM!" First the rash and blisters, then the blindness! If you can spare the time, you might want to send her a card with a personal note of encouragement to cheer her up (I can read it to her). (The address is 10511 Sagevale Lane, Houston, TX 77089).

Thanks again for your love and support,
Larry & Robin

Robin Update - 11/03/05

 
I have been informed by several of you that I am delinquent in updating Robin's Blog. I hope you will forgive me. As you will see, we have been busy.

In short, Robin is not doing great, but she is still pushing on towards beating this cancer. She received her last chemo treatment on Tuesday, November 1st. In about two weeks, she will have a series (oops- bad word in Houston) of scans done to see if anything shows. Then she will start six weeks of radiation (five days a week).

The Details:
Robin had her third chemo on October 11th, and all went pretty much as expected. The next two weeks were relatively normal and Robin's left eye (which had gone blind September 18th) was starting to clear. We saw her Ophthalmologist the following Monday (October 17th), and he said it was looking better. He planned to start laser surgery in about a month. However, Robin's body had other plans.

On Saturday, October 22nd, the Galveston "D'Feet Breast Cancer" fun run was held. About thirty of Robin's coworkers and family members ran or walked in her honor and for others who have breast cancer. Even Dr. Masel came out and ran (not walked). While they were walking and running, Robin met with other ladies who had survived breast cancer. I believe she found out how lucky she is to have the benefit of the research of the past few years when she spoke to women who fought cancer twenty years ago. Thanks to Lori and Gerry who organized the TLC group, and to everyone who works to raise money for cancer research!!! It really helps.
On Sunday, October 23rd, Robin developed a burn-like rash over most of her body. Then, on Monday, she totally lost the vision in her left eye again. That made her a bald, blind, boob-less, diabetic, cancer patient with a rash and a bad attitude. What a mouthful!!! She saw her oncology nurse on Tuesday (25th) and was prescribed steroids for the rash. She also called the Ophthalmologist and he decided to accelerate the laser surgery to save her right eye.

Monday (October 31st), was Halloween. The workers at Robin's facility dress up for the clients on Halloween. Robin's group dressed as famous bald people, and they persuaded her to dress up like Uncle Fester from the Addams Family. She looked GREAT. I posted a picture of her in costume. She even had the light bulb (I know SOME of you are old enough to remember).

Later that day, she had laser surgery in her right eye. The good doctor did more than originally planned because he felt the situation was fairly dire. The laser surgery went well, although the focal treatment caused "stabbing" pains that seemed to be tolerable, but painful just the same. For more information about her treatment, check the following website (and some of its links):
Laser Treatment for Diabetic Retinopathy

Robin had her last chemo on Tuesday (November 1st) after All Saints Day Mass. It went well. Alexis came and kept us company while Robin sucked down the toxic chemicals. It was a long day, but we were done by 5:00PM. She had to go back to get a white blood cell booster shot on Wednesday. The rash is almost gone but it left brown skin where it had been. The after-effects of the chemo are more pronounced than before, with much more nausea, but thank God it is the last one!!!

Thanks again for your kind thoughts and prayers. Now is NOT the time to stop. Robin plans to take her radiation at UTMB (University of Texas Medical Branch, for you "furners") at Galveston, so it will be fairly convenient with her work down there. We have been told that radiation has fewer side effects, and they are different. Most pronounced is the exhaustion, with some possible skin problems. So please keep up the prayers and support. As I said before, if you cannot think of anything else, send her a card with a personal note of encouragement. I cannot tell you how much these mean to her!!!
The address is 10511 Sagevale Lane, Houston, TX 77089.


Thanks again,
Larry