Robin Update -- The Hospice Invasion --- 07-31-2011

Robin took another big step recently. I thought I would pass this on, although I really haven't had time to digest it myself. Let me back up a little to fill in the gap from the last Blog entry (July 4th) until now.

On July 4th, Robin had just completed a two week treatment of IV antibiotics (four times a day for two weeks!) for her Urinary Tract Infection (UTI). She did pretty well until about July 12th, when Robin started showing signs of infection again. In the evenings, she began talking strangely, and her temperature rose a bit above normal. We sent a sample to the doctor, and got results on that Friday: Another Extended-Spectrum Beta-lactamase (ESBL) producing e-coli bacteria. This was like most of Robin's earlier infections, and is resistant to most antibiotics. On July 15th (my birthday, by the way), Robin started another two week treatment of IV antibiotics. This treatment was only once a day, so it was much easier to treat Robin. Her last dose was on Thursday, July 28th, and she seems to be doing well now.

Now, on to the new development…

For the past month, Robin has been much weaker than before. She has been unable to transfer into her wheelchair, or to go to the bathroom in the bathroom, or get a shower. This development has made it much more difficult to care for her, as you might guess. A little over a week ago, a friend (or two) mentioned that hospice might be helpful. Robin said that she would look into hospice to find out what was involved and get questions answered about insurance, out-of-pocket expenses, available services, etc. Within 2 days (although it seemed like minutes), Robin was signed up and they were moving equipment into the house. They even came on Sunday, July 24th to fill out paperwork and to give Robin an exam. Hospice apparently takes over all patient comfort issues: such as, pain prescriptions and medical equipment. They will help with baths, a nurse will visit regularly, a doctor will come every few months; even a Baptist chaplain came to visit. What they don't do is anything to fight the disease or to replace Robin's primary care physician. During the last week, we needed to call for help a couple of times, and the responses were quicker than I expected. Another couple of times, an assistant came and helped Connie (Robin's attendant) give Robin a bath and change the bed linens.

Like I said, I still have not yet digested this big change. Certainly, the extra help is appreciated, but the word "Hospice" has a feel of finality to it for which I was not ready. I have been assured that they are not just for people for whom death is imminent, but that's the feeling that I have. It reminds me of the sacrament of "Extreme Unction" (also known as "Last Rites") in the Catholic Church. It sounds like it's so final. The Church changed the name to "Sacrament of the Sick," and that doesn't seem so bad. Maybe Hospice should be renamed something like, "Medical Comfort Support," or something along those lines. I guess "hospice" is easier to say and already well-defined, so a name change isn't in the cards.

Robin's vision is still terrible. Her right eye is totally blind, and her vision with the left is very poor. She still cannot read the text on the television. In spite of all the problems and difficulties, Robin still has good spirits and she can still smile. I'm not sure how or why, sometimes, but she still has that memorable smile.

Speaking of how memorable Robin is, I had an interesting experience last week. I took a sports coat to the dry cleaners. This was probably my fourth visit to this shop in the last eight years, and the last visit was probably three years ago to pick up some stuff for Robin. When she was still working, Robin was a regular customer at this dry cleaner store. As the little Vietnamese lady took my name and address, she asked, "Where's you wife? I haven't seen her in a long time." I was dumbfounded. I never thought she would associate me with Robin, since I don't think we were ever there together. And I couldn't believe she remembered Robin after so many years. I asked her how she could remember Robin after so long, and she said, "She has cats, and I told her to keep the cats off of her clothes!" After I explained about Robin's illness, she said she was so sorry to hear about the cancer, and she said they would pray for her.

Well, I must close for now. Please keep praying for Robin and for everyone affected by Cancer. We continue to hear of people who have Cancer, newly diagnosed or recurring. We pray for them and for their families. This is a brutal disease, and some of the treatments are just as brutal. Please join us in prayer. And know that we appreciate your thoughts and prayers, your cards and letters, and your phone calls and visits.

Thank You!

Love,

                  --- Larry, Robin, & John

Robin Update -- Life After the Decision --- 07-04-2011

I'm sorry this took so long. Several folks reminded me that an update was overdue. I started writing this a few weeks ago (for the first time), but I get interrupted and forget to go back to it.

The last report was right after our 35th Wedding Anniversary. (I am hoping to post pictures this week.) John had just graduated from Texas A&M. Robin's mother was visiting from North Carolina. The next-to-the-last Shuttle launched. Robin learned that she had another Urinary Tract Infection (UTI). And, most importantly, Robin had just made the decision to stop taking chemo.

Medically, it has been a bit of a roller coaster. Robin completed her two week treatment for the UTI about the first of June. This was a different bacteria strain which, although drug resistant, was easier to treat than earlier infections. Everything seemed to be going well for about a week or two. Then, Robin started showing signs of infection again, so she sent another urine sample to the doctor. When the report came back, we learned that she had another UTI. This one was (again) an ESBL bacteria, like Robin's earlier infections, and (again) resistant to most antibiotics. This time she had to take two weeks of IV treatments, the last of which we gave her on Saturday morning, July 2nd. The drugs have had side effects, but NOTHING like Chemo, so overall, Robin has been feeling pretty well.

Robin's vision is about as bad as it has ever been. She doesn't tell me about it unless I ask the right questions because she knows that I get upset when her eyes bleed. She told me the other day that her right eye has been totally blind for months. She cannot see her hand in front of her face with that eye. She said the left eye seems to be a bit better than the right, but she still cannot read the text on the television.

Mentally, Robin has been doing pretty well except when the UTI starts getting bad. The tip off that Robin is getting sick is when she starts to experience delirium. We usually notice this symptom before fever. Robin starts by talking a bit oddly, switching topics in the middle of a conversation. As the delusions/hallucinations increase, she starts to talk crazier. For example, this time, as John walked past her, she told him to count the cards to make sure they were all there. John didn't have any cards, and no one was talking about cards, so we knew it was time to get her checked. We were early enough that they didn't make Robin go to the hospital (although the doctor wanted Robin to go there).

Spiritually, Robin is still at peace with her decision to forgo treatment, and has no regrets about it. She has started to do some small things to prepare, though there are lots of big things to consider, as well. Just talking about these issues is hard enough, so it is no surprise that things are going slowly. Some of our friends, on hearing that Robin is not receiving treatment, seemed to think Robin will be gone tomorrow. Although that could be true, the cancer is in Robin's bones, so it is slow moving and causes few problems besides the pain, which seems to be tolerable. Robin keeps reminding me that things will happen on God's schedule; not ours.

John is living with us for the time being. His office is pretty far away from home (about 45 miles), so he will probably be moving closer to work in the near future. However, his help since his graduation has been a great blessing to us both. In my job, we are preparing for the last launch of the Space Shuttle on Friday, July 8th. It appears I have been granted a (temporary?) reprieve from the post-Space Shuttle layoffs. I have been assigned to assist on the Commercial Crew Development (CCDev) project. This is a NASA program to get the private sector to develop safe, reliable, and cost-effective space transportation capabilities. NASA wants to pay a US company for a taxi ride to the Space Station, rather than the Russians. It might also provide rides to the Bigelow Aerospace inflatable Space Station (sometimes called a "Space Hotel"). It is an exciting project, and I think Boeing has an excellent chance of success because we have both space experience and commercial aircraft experience. (Note: This is not to be confused with the "Multi-Purpose Crew Vehicle" program to provide a capability to take four astronauts out of low Earth orbit for Moon, Mars, or other deep space missions.).

My younger (actually, they're all younger) brother, Bill, dropped by for a couple of days last week. Bill and Robin are tied by Cancer, his having been a tumor on his back. He had to have multiple surgeries because they originally thought it was just a cyst, and did not remove enough margin around the tumor, then he had to have plastic surgery to repair the large hole. Bill has been Cancer-free for a while now, but he and Robin had a good time swapping Cancer stories.

Please continue to pray for Robin and for everyone affected by Cancer. In the last few weeks, we learned of several people for whom Cancer has recurred, or who were newly diagnosed with Cancer. We pray for them and we pray for you folks, who care. Please join us in prayer.

Love,

                  --- Larry, Robin, & John