Robin Update … Life after Ike --- 9/24/08

The last time I wrote (9/6/08), Robin had gotten over a bout of depression, and was making a rebound at home with the help of home health care and her mother. Robin's Uncle Bill, her mother's last sibling, had passed away and Johnnie (Robin's Mom) went back to North Carolina to bury him. Also, Robin had pictures taken (X-Rays and MRIs), and an appointment with her neurosurgeon, but we did not know the results.

Robin's neurosurgeon (Dr. Wang) said that everything was looking good, from what he could see in the pictures, but the titanium plate obscured some of the details. He did let Robin retire her turtle shell. He suggested that she "wean" herself from the shell, reducing the time she wore it a little each day. Well, Robin hasn't worn it since that time! Dr. Wang was concerned about some neuropathy (loss of feeling) in Robin's fingertips and weakness in her left side, so he ordered additional MRIs of her neck vertebra. Here we go again!!! Because of her extreme claustrophobia, Robin had to be knocked out, so a simple MRI required general anesthesia (not just sedation), and took almost all day to get done (7:00am - 4:00pm). Because of Ike, the process was delayed, but she did the pre-op procedures on Friday (9/19), and had the MRIs on Tuesday, 9/23/08. She is supposed to get the results on 9/25 and talk to her oncologist on 9/26 (Friday).

While Robin's mother, Johnnie, was in North Carolina, several folks helped me with Robin's care during the day so that I could go to work. Most notable among them was our neighbor, Judy, who stayed with and assisted Robin most days, doing many of the essential tasks that Robin requires. She was very helpful. We also had assistance with meals from some of our parish family, so that I didn't have to cook, and Robin didn't have to eat my cooking. Robin's mother returned from North Carolina on Wednesday, 9/10/08, with hurricane Ike looking like it was headed to South Texas. Boy, was I glad to see her!

Over the next couple of days, as you know, Ike decided that Galveston and Houston would be more fun than South Texas, so he turned northward, making a beeline for us. Robin chose not to evacuate, because I was not allowed to go with her, so we "hunkered down" and rode it out Friday night and Saturday morning. We lost electricity at about 11:45 PM (cable TV an hour before that, in case you are trying to decide between cable and satellite TV). Robin's bed was partway up when the power died, so it was stuck in that position. Robin was strong enough that the power to the bed was not critical. During this trying period without electricity, Robin seemed to be getting stronger each day and was trying to do more on her own. She spent much more time out of bed than in it, and she seemed to be having more good days than bad days. Anyway, we (Robin, her mother, and I) survived Ike and we haven't killed each other (YET)!

The house also seems to have survived with no major damage from Ike. We lost 2 of 3 fences and a garage door window. The huge tree in our back yard lost all the limbs near the house, but didn't appear to hit anything but rain gutters. I hired some guys to cut up the branches and remove them ASAP so we could get the fences replaced, allowing the neighbors to let their animals out of the house. Robin's mom decided that the whole tree had to go, so we delayed the fence repair until the whole tree was down! On Thursday, friends from church offered us the use of their generators, since their power was on. We accepted the offer of the smaller one, and they brought it over, helped me set it up, I got it started and hooked up the refrigerator, and then the power came on. Murphy strikes again!!! We found out later that it was a mistake that our power was restored when it was. The crews were supposed to go somewhere else, but ended up in our neighborhood. Robin's deceased brother, Larry, worked for Duke Power for 30-something years, directing exactly this kind of repair work. Robin swears that her brother Larry was directing the crew to our neighborhood. Who am I to argue? Anyway, although we had power, we didn't have cable or Internet connectivity until Sunday. Our friends with Satellite TV were fully connected even when running off of a generator.

Robin has been getting cards and notes in the mail on most days and she really gets a kick out of them. A few people (some that she barely knows, even) have been sending cards weekly. She really appreciates receiving each and every one of them. Robin saves each card in a basket and periodically looks through them when she needs a boost. Any card makes her smile, funny cards make her smile more, and smiling makes her better. Here is a BIG hint--- Robin's Birthday is next Tuesday, 9/30. Send her a funny birthday card!!!

There are so many people that have helped us in so many different ways, I wish I could thank each one of you personally. Once again, I thank everyone who remembers us in their prayers and thoughts. It is very important to us. Especially pray for Robin's continued recovery.

Finally, I want to leave you with a thought. As we have continued through this journey, Robin and I have come to know many other folks who are suffering from cancer or some other debilitating disease. Each of us knows at least one other person who is suffering. Each of us has the ability to lift a bit of their pain, if only for a moment. We want everyone to know that the smallest thing that you do for someone who is suffering will help; a call, a card, a meal, a small gift, or a prayer. Consider stepping out a little and doing something extra this week for someone who needs a touch. (Remember Matt 25:34-40).

Thanks again to everyone,

Our love to all of you,


                  Robin, Larry, John, and Johnnie

Robin is Making Progress Again --- 9/06/08

I must apologize. This update is long overdue, since the last was in mid-July.

The last time I wrote, Robin had just gotten home from the Rehab hospital. Her mother, Johnnie, was stuck in an airport in Atlanta, and John was home and helping with Robin's care. We got through the weekend somehow, and when Robin's Mom arrived (after a long and eventful trip through Atlanta), I was able to return to work. Work was actually like a vacation, compared to everything it took to keep Robin going. You might also recall that my old green truck started having problems just before Robin came home. Well, Robin and her Mom ganged up on me and "forced" me to purchase a newer used vehicle that would be more reliable and would be easier on Robin's back. It certainly was a challenge trying to make up for lost time at work, hunt for a car, and taking care of household duties at night. I eventually purchased a used Toyota Highlander and sold (almost gave away, actually) my beloved truck.

In my last entry, I failed to say that Robin was placed on long term disability by her employer while she was in the Rehab hospital. Of course, to be on disability, they told her that she had to be unemployed and unemployable. In short, Robin lost her job. It was clearly a business decision, not a personal one. They need someone who can be there every day, and Robin cannot do that now. But it hurt her badly, just the same. Robin was very proud of her work record -- over 24 years with people with brain injuries, 15 of those at TLC, and almost 30 years when you include other disabilities. From what I've seen over the years, Robin loved using her experience to work with the patients and staff at TLC! She was told that when she is able to work again, they would take her back, but that she might not be doing the same work. TLC has been very good to Robin in the past, and she has always felt like they were family, so we are trying to take this situation in stride. We just want Robin to get back on her feet, and back to work, if it is God's will.

Once Robin got settled at home, her disability, her job loss, having to fill out reams of application forms for disability insurance, COBRA, Social Security, etc., etc., etc. --- it all became too real and a deep depression set in. The constant pain added to her depression. In addition, she had difficulty with side effects from her medications, causing weakness, nausea, and blood sugar problems. These problems exacerbated the bleeding in her eyes, adding to her blindness. During this period of depression and illness, Robin's therapy suffered greatly, and the gains she made in the Rehab hospital were almost totally reversed. Is it any wonder??? This was a very difficult time for all of us. It took almost nothing to get tears flowing, and I seemed to be the Master of it, much to my chagrin. You may know the saying, "If Momma ain't happy; nobody's happy!" Well Momma wasn't very happy!

Fortunately, (and I'm not sure exactly when or why it happened) Robin came out of the tunnel and started to get determined not to be beaten. That's not to say that she is upbeat all the time; but the periods of depression and illness are shorter and less frequent. Thank God! It was like turning a corner--the difference was profound.

In the last few weeks, she is starting to build up strength and confidence again. She has been able to help with a few chores that can be done from bed or during the longer and longer periods she can sit in her wheelchair. She sees a nurse once a week, and she gets physical and occupational therapy each twice a week.

Last week, Robin's Uncle Bill, her mother's last sibling, passed away. Since his wife is in a nursing home in the last stages of Alzheimer's disease, and they have no children, Johnnie (Robin's Mom) had to go back to North Carolina to bury her brother and take care of his estate business. Since she had to leave, and John's back in school, I have needed to take off time from work to take care of Robin. I must say, I didn't realize how much work it is to take care of her without help. Robin had Doctor appointments for X-Rays and MRIs, so I had to take off time anyway. However, because of Robin's needs, it has been difficult to get someone who can (and who Robin will let) take care of her. It looks like my work hours will continue to be erratic until her mother returns (hopefully, next week).

As I said, Robin had pictures taken this week, but we have not met with the doctors yet. Robin has an appointment with her neurosurgeon on Monday morning, and she has an appointment with her oncologist on Friday, so maybe next weekend I'll be able to send another update with good news about her medical condition. She is hoping the neurosurgeon will let her retire her turtle shell, and that she will be healed enough that she can restart chemotherapy. In the meantime, keep her in your thoughts and prayers.

I'll close for now. Several of you have sent Robin cards and notes in the mail, and a few of you have been sending them regularly. She really appreciates receiving each and every one of them. Robin has a huge magnifying glass and she can currently see well enough with it to read the cards and letters herself. Some of the cards have had "interesting" addresses on them, like "Former Princess of Lincoln County", and "Olympic Champion, Cooter Burns" (a reference to the turtle shell and the North Carolina name for a turtle, "cooter"). Our friend from Grad school sent a political bumper sticker for "Brocko Bama" (because when Robin couldn't see, that was what she heard on the TV). I wish you folks could see Robin's face light up when the mail comes and she hears that there is a card for her. She is like a little kid at Christmas as she breaks out the magnifying glass and opens the envelope. They really do pick up her spirits. KEEP UP THE GOOD WORK!!!

I also want to thank everyone for the prayers and support for Robin, and for John, Johnnie (Robin's Mom), and me. Please pray for a continued recovery for Robin. She really wants to become independent and to eventually get back to work where she can help other people. It is clear to me that her experiences have given her new insights into the treatment of folks who are disabled.

Thanks again to everyone,

Our love to all of you,

                  Robin, Larry, John, and Johnnie