Robin Update--Back Home Again --- 04-17-2011

I must apologize for not sending this sooner. Robin is at home and is slowly recovering from her latest bout with drug-resistant bacteria.

I was called on Monday, April 11th, at 1:00 pm and was told that they would be releasing Robin at about 2:00 pm. When I arrived, Connie, Robin's attendant and friend, had everything packed up and ready to go. She left with a load of stuff to drop off at our house on her way home, expecting us to be close behind. By 6:30 pm (I guess that's 2:00 pm in hospital time), we were finally on our way home! It was pretty exciting getting Robin in and out of the car. She had not been on her feet for almost a week, and she was weak from her illness. But Robin was also determined to go home, so we had a few trial attempts in her hospital room before wheeling her out. In the end, she made it!

Robin is getting a dose of IV antibiotics through her port every day for two weeks. Connie handles it during the week, and I get the weekends. The process is not difficult, thanks to the port, and only takes about two hours, most of that is waiting. Robin is slowly getting stronger, though she is not back to where she was before the hospital.

I spoke to Robin's oncologist (Cancer Doctor) about where we go next. He said that, once Robin is finished with her antibiotics, he will discuss a new treatment plan with us. At this point in her disease, Robin seems to be between a rock and a hard place. The chemo treatments that seem to be effective against the cancer also cut down on Robin's immune system. That makes her vulnerable to infections. When she gets sick from the infections, she can't take the chemo, so the cancer advances. Sounds like a vicious circle, unless one of Robin's doctors can break the cycle.

In general, Robin's spirits are still pretty good. I have been reading your cards and emails to her. They definitely help. Margie, a college classmate, has been sending a card or note every day during Lent. Robin can hardly wait for me to check the mailbox! And Friday isn't Friday if there's no card from Pat and John! Thank you!

Please continue to pray for Robin. We pray for you folks every day.

Love,

                  --- Larry, Robin, & John

Quick update --- 04-07-2011

About 11:30 PM on Wednesday, Robin was moved from the Emergency Room to Room 661 in the cancer wing of Clear Lake Regional Medical Center. Almost 13 hours in the ER. WOW!!! I got home about 1:00 AM and slept a few hours before going to work.

Before you think about visiting, you should know that, because her infection is drug-resistant, Robin is in isolation (meaning visitors must wear a funny yellow smock and rubber gloves). I didn't know my hands could sweat that much! Because Robin is still anemic, and because of the pain medication and antinausea medication, she will probably sleep through your visit.

Robin is not feeling well, but she's not terrible. My guess is that her medications are not being given to her the same way as home. This became obvious 10 minutes ago when they seemed amazed that I asked about her laxatives. I don't know what happened to the three copies of her prescriptions I gave them!!! Anyway, after two days without the "digestive help," if it can't go down, it will come up. The nurses can't give it if the doctors don't authorize it. I'm not sure whether the nurses or the doctors skipped the over-the-counter stuff, In either case, I have made it clear that Robin better not start puking, and antinausea medicine is not going to stop it. Hopefully, they got the message!

The doctors are waiting for the culture report to determine what the specific bug is. Once they know that, and if the insurance cooperates, AND if her fever breaks, Robin might get out.

I'll keep you posted. Please keep praying for Robin.

Larry

Robin is in the Hospital (Maybe Just a Short Stay?)---04/06/2011

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I just wanted to let our friends and family know that Robin is in the hospital. Actually, she is in the Emergency Room of the Clear Lake Regional Hospital, to be exact.
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Robin was supposed to get her weekly dose of Chemo today. When Connie, Robin's friend and attendant, started to get Robin up to get dressed, she saw blood on the bed, apparently from the area of Robin's catheter. Connie called me and Robin called her doctor. The doctor told Robin that she should go to the emergency room to get checked out, so when I got home, we gathered our stuff , called an ambulance (since Robin was weak), and off we went.
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After lots of blood letting and samples of other fluids, they changed Robin's catheter. A little while later, we learned that Robin has another UTI (Urinary Tract Infection), and her blood is too thin (she takes Coumadin because she had blood clots in the past). Again, the strain of bacteria causing the UTI is drug-resistant, so they will be giving Robin IV antibiotics for several weeks.
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At this time, 9:00 PM, we are still in the ER (after 10 hours). They are waiting for an available room, and probably having trouble because of the infection. They are going to keep her overnight to make sure the bleeding has stopped. They probably will keep her until insurance approves home delivery of the IV antibiotics that Robin will need, too. I'll try to send more information later, when Robin gets to a room.

Please keep Robin in your thoughts and prayers,

Larry

Rough Week at M.D.A. --- 04-03-2011

This was an interesting (and busy) week for Robin at M.D.Anderson. On Monday, Robin was scheduled for a 2:30 blood test, then an appointment with her oncologist, followed by a dose of chemo, Navalbine® (Vinorelbine (generic)), and Zometa® (zoledronic acid), which strengthens the bones and slows the spread of cancer in the bones. It sounds simple. After the blood test, we had an (unscheduled) three hour wait to see the doctor (about 6:30PM). From the blood test results, he determined that Robin required a transfusion of A+ blood, and sent us to the lab before the chemo treatment. Unfortunately, the Lab closed at 6:00, so we tried to go back to see the doctor or nurse, but they were gone. We found some nurses who left messages for us stating that the lab work needed to be rescheduled. We decided to move to the Chemo Treatment area, registered, and waited. When we finally got to the treatment room, the infusions were fairly quick (maybe 2 ½ hours), and we finally left M.D.Anderson at about 10:30 PM. It took 8 hours (2:30 to 10:30) and my pedometer said I had walked (pushed a wheelchair, that is) for 2 ½ miles. By contrast, at Deke Slayton, where Robin was treated for five years, this whole process would have taken three hours (four, max), and I would have walked less than a quarter mile, all on the same floor (not to mention the free parking). This is quite a big contrast from M.D.Anderson.

Philosophical sidebar: The contrast between M.D.Anderson and Deke Slayton got me to thinking that life is full of trade-offs. There is a good and a bad side, a plus and a minus, negative and positive to each decision we make. For all the scientific and technical benefits of this world class facility called M.D.Anderson, there is a cost in time, money, flexibility, compassion, and humanity. That's not to say that it is a bad place, or that we made a bad decision. Certainly, there many more resources available to us at M.D.Anderson, but there is a cost. We have made choices that others have questioned, but we felt they were the best for Robin at the time with our understanding. We need to remember that there is no right or wrong answer. Only a continuum of trade-offs.

Back to the story: On Tuesday, at about 10:00 AM, Robin got a call from M.D.Anderson, wanting to know why she missed her Lab appointment at 6:15 AM. WHAT??? Recall, we left at 10:30 the night before. How were we supposed to know she had an appointment that early? We probably would have spent the night if we had known! It took Robin the rest of the day and many phone messages before she got the Lab appointment and the blood transfusion rescheduled to both occur on the same day, Thursday.

On Thursday, we arrived for the Lab appointment to type and cross her blood at 8:30AM. We had to wait for the test results before the transfusion could be scheduled. This occurred at 10:30. Then we had to wait for the transfusion room (about 1:00 PM), and then wait for the blood to arrive (about 2:00 PM). The IV was started, Robin was given some medicines to counteract any reactions, and finally the transfusions (2 units) were started. We were on our way home before 7:00 PM. Only 10 hours after arriving!

In general, Robin's spirits are still high, even though her pain has been increasing and she continues to grow weaker. Robin and I believe that it is through your love and prayers, and through God's Grace, that she can maintain her positive outlook in spite of the disease and the difficult experiences (like what she went through last week). Robin told me that there are days when she didn't think she could make it without knowing you were there. We have been abundantly blessed to be surrounded by angels who have been determined and steadfast for so many years. Although no one could deserve such support, Robin has come to depend on it, and we pray that you will be encouraged by the amazing impact you are having on her life. Please continue the good work that you are doing. We hope that you will pray with us for mercy and healing for everyone suffering from cancer and other long-term diseases.

You are in our prayers every day.

Love,

                  --- Larry, Robin, & John