Welcome to Bandaids Blog!: August 2013

On April 12th 2013, after a trip to the ER my mom was diagnosed with lung cancer. Stage 4 with 2 metastatic lesions in the brain. So begins the journey that we have taken over these last 4 months. After being released from the hospital following a 5 day stay, mom was able to go home on her own with a little bit of help from her "roomies."

So the treatment regimen begins. 3 weeks (15 treatments) of whole brain radiation and 5 targeted lung treatments. My sister and I were able to manage almost all the transportation to and from Radiation. Thanks to Jeff and John who filled in when we couldn't. During these treatments mom's spirits were high and she had fun "acting the fool" with her horn and bell on her cane and autographs on her bald head. She made some friends and was able to share the treatment experience with others. I think this was one of the most important chapters in her journey. The simple pleasure of laughing, smiling and connecting with others. During her last whole brain treatment she suffered a seizure in the treatment room but her sense of humor never waned. She even made jokes about her "flop like a fish" episode.

Throughout May and June there were a few mishaps and mom got one heck of a cold. Increasing weakness and and the need for adaptive equipment led to many arguments between her and I. Her staunch refusal to allow me to drill into the tile in the bathroom to hang grab bars, refusal to allow a bedside commode in her room and numerous other battles made this a particularly difficult time for me. As a nurse I have been taught to be proactive and set things in motion to keep "patients" safe. I found it extremely frustrating to attempt to do what I know how to do, only to be told "NO, I won't do that" with every suggestion that I made.

Finally on July 6th while I was in Daytona for the Coca Cola 400, mom fell and was no longer able to bear any weight on her left leg. After an MRI it was discovered that she has a Tibial Plateau fracture. This was the point that we started staying with her full time. "We" is myself, my daughter Nikole and her cousin Danielle. I couldn't do this without the help and support of my family and friends.

On July 18th I had to make an unexpected and very hurried trip to Texas to get my youngest daughter, Shyenne. My friend Gary and I drove 44 hours straight there and back. It was a long, tiring trip but Shy is home and that wipes a big portion off my plate. She has seen what her dad is all about. I hate everything she went through while she was in Texas, but sometimes you have to learn the hard way.

When I got home from Texas, mom had a period of rapid decline. She went from being a one person assist to max assist overnight. Legs like jelly, dead weight. Also incontinent. At this point I called Hospice and made a request for services. My sister was pretty upset with me because to her Hospice means your going to die right away and that we were giving up. She was able to meet with the Admission Nurse from Hospice (Thank You Libby) and understands the services better now. Hospice has been a great help to us. They have made so many things easier to arrange and manage. We had the "post radiation" MRI on the 26th of July. Had to have Ambitrans come and take mom on a stretcher. That was a discouraging day. Realizing that we can no longer lift her into the car. so many things that I had hoped to have time to do with her. Like a drive down memory lane out to my grandpas old gas station and such. My sister Mitchie and I were trying to get these things together, but we didn't get there fast enough. Maybe I can still figure out how to make it happen. We shall see. The results of the MRI were not good and the brain mets actually got "minimally" bigger during radiation Even though the treatments did nothing for the tumors, I still think mom benefited from them a lot. She had the opportunity to take a stab at fighting this disease and meet others who are doing the same.

It's been a difficult road for everyone. A mishap with moms dogs led to visits from Animal Control, The Sheriffs Dept and ultimately DCF. What do the sheriff and DCF have to do with the dogs you ask? Well the same neighbor who claims moms dog (an Australian Shepard) attacked his dog also called the sheriffs to report that there was increased traffic at moms house and that he was concerned we were selling drugs and running a grow house. The Sheriffs Deputies felt obligated to make a report to DCF to determine whether we were exploiting mom and her meds. Some folks just have nothing better to do I guess. All that was a huge hassle and WAY more drama than I needed, but it's over and done except for an appearance in "Doggie Court" in Oct.

There are no more treatment options available at this point. Chemotherapy does not cross the blood-brain barrier so will be useless. Plus mom does not have the strength for it even if it was an option. Mitchie and I have decided to forgo any more Dr. appointments. It's just too much on mom to use Good Wheels and ride in the wheel chair for any length of time. We are saving her energy for the fun things and just trying to do this the best way we know how. With the love and support of our family and friends I think we are succeeding. There are not enough ways to thank the people who are supporting us through this. Moms friends Allen and Jeff, Sissy's boyfriend Mark, Laura and Dan, Dragon and her kids and of course my daughters and Dani and Nicole W.
We had a great birthday party for Okie Dokie on Sat Aug 3rd here at moms. She was able to join the festivities for a short time and had a ball. On Monday we had a 5 generation parade through the neighborhood. Did I mention that my sister is in clown school? Hence the parade complete with floats, a clown and Jimmy Buffett music. On Sat we filled moms bedroom with balloon animals (Sissy's been practicing) and played an old song "All Gods Creatures Have a Place in the Choir" about fifty times. Good Fun! Made mom's day. Now we have to play the song every day for her. I plan to get pics added to this blog, but I've spent too much time here already this AM. Time for mom's breakfast and such...