MD Anderson Reports and Plan --- 07-25-2010

After the delay from her hospitalization last week, Robin finally saw her oncologist at M.D.Anderson Cancer Center for a follow-up after the tests. The tests still showed no sign of cancer in the lungs, which was very encouraging, especially after three months without Chemo. On the negative side, the tests also showed lots of cancer in the bones. Although the MDA reports did not compare to the previous scans, it sounded like there has been considerable growth. In fact, the most distressing report said that Robin's left femur (a.k.a., "thigh bone") is in very bad shape from cancer growth. Previous scans did not report anything in the femur, but now there is a sizable "hole" and it is considered a fracture risk because of the damage.

The doctor discussed the treatment plans that Robin might take. He said that she needed radiation for the femur as soon as possible. This, combined with continuing the Zometa, which is used to prevent skeletal fractures in patients with cancer, should reduce the fracture risk. The radiation treatments should last for five days, but it will take a few days to get things set up. (Robin just told me that MDA called and told her she would meet her radiation oncologist on Monday, 7/26, and have the set-up simulation on Tuesday). After the radiation treatments are complete, and after Robin completes her IV antibiotics, she should be able to enter a treatment study. The doctor mentioned a study that adds Avandia to a standard chemo treatment, Exemestane (I believe is the name). You might have heard or read about Avandia in the news recently. The FDA was considering a ban on Avandia because it has been tied to heart attacks and strokes. However they decided the benefit outweighed the risks for some patients, so it was not banned. Anyway, this combination has been effective in cases like Robin's, and they are now trying to figure out what the right dose should be. The treatment is relatively free of side effects, too. What more could you ask? Robin was pretty excited about the prospects of starting Chemo again, especially one with minimal side effects. (It just doesn't seem right for a person to be excited about Chemo!!!)

Robin is still feeling good, mostly due to no chemo. Her femur is growing more painful. The cat seems to like perching on her leg, and Robin has gotten to the point where she cannot stand that anymore, so she wants to get the radiation started ASAP. She is still getting the IV antibiotic, and will be for about nine more days. Hopefully, the radiation and the antibiotics will finish together, so she can move directly into the chemo as soon as possible.

Thanks to everyone who continues to keep Robin in their thoughts and prayers. We are so blessed to have your support. We can never fully express our appreciation. We especially appreciate those who help Robin stay in touch with the outside world, and let her know in a tangible way that she is loved. Thank you.

Please continue to keep Robin in your prayers. On a side note, Robin's father (Hal) seems to be doing much better. Apparently, a large part of his problem was a benign tumor in his intestines. They were able to remove it through the colon, which was a less invasive procedure than we expected. I imagine full recovery will take some time, though. Please remember him in your prayers, too.

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

Once again, thank you,

                  --- Larry, Robin, & John

Robin is Home Again !!! July 15, 2010

Just a quick note . . . There has been a lot going on . . .

Robin was able to leave the hospital on Tuesday. She received her first treatment with the IV antibiotic before she left the hospital, so that leaves 20 more doses for me to give her. BUT she is HOME!!!

Overall, she seems to be feeling good, and (at least, until she gets tired), she is pretty coherent. I'll try to write more over the weekend, but for now, I'm thankful she is home again.

Thanks for all the thoughts and prayers,

Larry

Robin Hospital Update -- 07/13/2010

Just a short note...

Robin is still in the hospital. She learned today that the bug that caused her Urinary Tract Infection was e-coli. However, they do not yet know what treatments will be effective in fighting it. That report is due tomorrow. The infectious disease doctor expects that it will be the same as what put her in the hospital last time, so he has already started that treatment. If he is correct, and if the insurance company approves home administration of the IV, then she may be able to come home tomorrow. The doctor said she will need three weeks of treatment this time.

Robin has improved significantly in the past two days. Even yesterday, towards the late evening, she was starting to show signs of "loopiness," but today she seems perfectly normal. We seem to be past the crisis stage.

Please keep Robin in your thoughts and prayers.

Larry

Robin is in the Hospital (AGAIN) --07/11/10

Robin is in the hospital again (Clear Lake Regional/Heart Annex, Room 4405). I asked John to write a message to you (since he had my PC) to help me out. His note is below. ----Larry

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To all concerned,

On July 10, 2010, Robin was admitted to Clear Lake Regional Hospital at 11pm. We decided to take her to the hospital after several hours of her talking incoherently, and a temperature of 101 degrees. As the night progressed her speech deteriorated and she began to display symptoms similar to her last trip to the ER, when she had the septic shock.

When she was in the ER the doctors ran a battery of test, which consisted of chest x-rays, blood test, and many other scans. One course of treatment the ER doctor decided upon required Robin to have an injection to block her pain killing narcotics, since he thought she may have overdosed and her blood pressure was so low. The staff moved too fast for us to object to the treatment, and within moments Robin was in immense pain and appeared to be having convulsions. She was thrashing, violent, sneezing, gagging, yawning, and yelling at everyone in the ER. In fact, at one point, she slapped Larry, who was trying to calm her, and she told him to “Shut UP!” During the chaos, the staff attempted to check her blood pressure. Thanks to Robin fighting them, and the machine not working properly, the hospital staff had to make many attempts to get an accurate reading. When they finally got a properly working machine, they got their good blood pressure reading. After her BP was read, they gave her a sedative, as she was still very violent, and thrashing. The whole ordeal took about two hours before she finally settled down and drifted into sleep.

Around 6 am, Robin finally was moved into a room, #4405, in the “Heart Hospital Wing” across the street. She slept all morning, and did not wake until after noon. Shortly after waking, an on-call doctor showed up to discuss her situation. He recommended taking her off a couple of her medications and urged Robin to be active. The doctor said physical activity is the best possible pain medication, because our bodies will secrete a natural morphine. Overall he seemed positive about Robin’s current situation, and has since prescribed her antibiotics for her UTI, which all parties believe is at the root of all her symptoms.

Currently, we are not sure when Robin will be able to go home, and she will miss her MD Anderson Appointment, which was scheduled for July 12. Despite the setback, we have not forgotten how blessed we are. We would like to thank Dotty C. for bringing Holy Communion, and we would like to thank Deacon Al for visiting early and praying over Robin. We all appreciate the prayers, ask for ya’lls continued support, and we will continue to keep everyone up to date on her status.

----John (and Larry)

Robin Update: Initiation into MD Anderson --- 07-05-2010

NOTE: You might have missed the June 8th update (Since I failed to publish it until now), so please take a look. It includes a picture of Robin's anniversary present, earned from 34 years of living with Larry.

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I apologize (again) for not communicating sooner. I had several folks asking me to provide a picture of Robin, and so I kept waiting for an opportunity when she was dressed and had on makeup so I could take the picture. Generally, this meant once a week, after church. Unfortunately, once we get in the door, it's straight to the bathroom, and out of the nice clothes. THEN I remember that we need a picture. Finally, on July 4th, I remembered BEFORE she changed clothes!

Since the last blog entry in June, the biggest major event has been Robin's admission into the M.D.Anderson Cancer Center. This was a significant accomplishment, taking almost two months to get everything together and sent to them. They wouldn't even schedule an appointment until they had everything in hand.

When Robin started the process, the intake manager only told her that they needed "everything." "Everything" is an incredible amount of data. Just since cancer was diagnosed, her file at Deke Slayton cancer center is 8" - 10" thick. In addition to those records, she has records from her PCP, three hospitals, her surgeon, endocrinologist, neurosurgeon, thoracic surgeon, and allergist. Each of them has forms to complete, and you must show personal identification to get the data transferred, thanks to HIPPA. She also needed a letter of referral from her PCP, which expired before all the materials were transferred, so Robin had to get another referral! Eventually, Robin's oncologist saw what was happening, and she got her nurse to assist. Two weeks later, about mid-June, Robin had an appointment for July 1st.

The night of June 30th, Robin hardly slept at all. She was both nervous and excited about her appointment. When July 1st arrived, Connie got Robin ready while I went to work to attend a meeting. Dottie C. offered to drive us down to Robin's first appointment, since she is very familiar with the Medical Center, in general, and MDAnderson, in particular, because she is a volunteer there. She picked us up and got us there a half hour (or more) before Robin's appointment. Amazingly, it was not that long before they called Robin's name. Instead of seeing a doctor, though, we met with an "intake specialist;" basically, a clerk who checked over the ten page application I filled out the night before. Then Robin had to (electronically) sign a dozen forms regarding patient rights, tissue samples, personal information, insurance, financial responsibility, etc. The whole intake process took almost exactly an hour, finishing at 12:30. That's when we found out that Robin's doctor appointment was at 1:00 PM. Robin was finally called at 1:30, and she was shown to an examination room. Robin's doctor appeared (with intern in tow) about 15 minutes later.

We liked the oncologist who had obviously read (at least SOME of) the materials that Robin spent so much time gathering. He discussed her cancer situation and explained the cancer trial processes a bit and told Robin that he had a phase 1 trial in mind for Robin. The first step is to get a complete set of tests and scans performed. Robin is due anyway because her last scans were done in April. (Hard to believe it has been that long since Robin had Chemo). After these tests, if she is still a candidate for the trial, she will need a DNA test, looking for certain markers. If she "passes" that test, the treatment will be by pill. If she does not pass the DNA test, the doctor would refer Robin to another oncologist with a trial that might fit. In any case, Robin will still get a monthly infusion of Zometa (zoledronic acid) for the protection and repair of her bones. After the doctor finished, he told us to wait in the waiting room to get her tests scheduled.

We waited for a long time before we thought we heard Robin's name called. When we went back, the scheduler was able to set up most of the scans for Tuesday and Wednesday (July 6th and 7th), and a doctor's appointment for July 12th. We got out of there at about 4:30, just in time for rush hour! And then the rain from Alex started (again). Fortunately, Dottie knew a few tricks. Even though she doubted her own sense of direction a couple of times, Dottie got us to Beltway 8 without trouble, and completely avoided the freeway gridlock that we were close enough to witness a few times. Once on Beltway 8, home was just minutes away. Dottie is amazing!

Robin has been taking it easy this weekend. John has been out of town with friends for the long weekend, so I haven't been taking it easy. Robin is still feeling pretty well (due to no chemo for so long). Her pain levels have generally been tolerable (thank goodness for pain meds), but she is concerned about a new pain on her right side. Perhaps the scans will explain this new pain.

Once again, our thanks to everyone who continues to keep Robin in their thoughts and prayers (in spite of the lack of timely updates). Special thanks to Dottie. She continually surprises us with her patience, her energy, and her love. Terry and Ken call Robin fairly regularly, and Pat sends Robin a weekly card. Alexis comes over and reads to Robin at least once week. These and many other less frequent communications help Robin keep in touch with the outside world, and let her know in a real sense that she is loved. Thank you.

Please continue to keep Robin in your prayers. In the last week, Robin's father has been hospitalized, and the doctors are still not sure what is going on. We ask that you keep him in your prayers, as well. We continue to pray for all of you each day, and we thank God for the gift you have been to us.

Once again, thank y'all,

--- Larry, Robin, & John