Today, Joe Klein over at Time made a few people angry. He wrote an article ridiculing the Veterans Affairs Secretary Eric Shinseki’s lack of public visibility and the problems with the claims backlog. I watched over the Twitterverse as people argued the relevance of the article. Everyone is missing the mark. Veterans and their families don’t really care how many television interviews Secretary Shinseki does. Veterans and their families want the services they fought for and earned. The backlog is just the tip of the iceberg. The fact that the VA is having such a difficult time processing claims is a sign of much bigger problems. Clearly, the VA is lacking the management and infrastructure to support the heavy load. If it is that difficult to get in the door at the VA why would it be any different inside the door?
My dad went to the emergency department at the Jesse Brown VAMC in early October 2011. After several tests and scans a physician informed him he had cancer. The ED gave him discharge notes that included information regarding a biopsy appointment and primary care appointment being made. Normally, the VA makes an appointment and sends a letter in the mail or makes a phone call to the patient with the appointment information. Several weeks went by and my dad heard nothing. He contacted the office of his primary care physician and they had no record of an appointment. At that time an appointment was made for the middle of November 2011 with primary care. When he finally met with his primary care physician it was then that an appointment for a biopsy was made. He had a biopsy near the end of November 2011. He received the results by telephone, later in December. Several oncology related appointments were set up with approximately 4 to 5 different oncologists, between Jesse Brown and UIC. Around January 2012 my dad was informed that he had Stage II cancer, and they were not certain of its origin. At this time a decision was made to resect bone and tissue from his thoracic cage and cavity. He would have this surgery at the end of March 2012 at Hines VAMC.
Between October 2011 and March 2012 no medical intervention took place to mitigate the cancer in my dad’s body. It would be another several months before the Jesse Brown VAMC would begin to administer chemotherapy via a port in his upper chest. He went to chemo appointments every few weeks. He developed a magnesium deficiency which would hinder his ability to receive chemo. So many of his chemo appointments were postponed till after he received supplemental intravenous magnesium. The magnesium IV could sometimes take hours. During the time period that he was receiving chemotherapy, it was by appointment, set by the VA facility. On most occasions he would show up to his 9:00 a.m. appointment and not be called back till after lunch. Several other occasions he would show up for his appointment and was told they didn’t have any chemo and they would have to reschedule.
Perhaps, if he had access to a higher echelon of care his Stage II cancer wouldn’t have become Stage IV metastatic carcinoma. And at the very least he may have lived longer than 4 days past his 65th birthday and had a better quality of life for his last few months on this earth.
Veterans and their families that are suffering due to VA shortcomings want acknowledgement that their suffering is indeed real. They want to be heard and validated. They want someone to take responsibility. I am one of them. My dad is dead because of the poor organization and management of the Veterans Affairs Healthcare System. Unfortunately this is par for the course. Someone on twitter today asked for names of people that are detractors of Shinseki. My name is Allie Carnes and you can add my name to the list of people that think Sec. Shinseki should no longer be in charge of the Department of Veterans Affairs.
If anyone from the VA or Congress is reading this and thinks that I am wrong ask yourself if you would want to wait 8 months for chemotherapy knowing you had cancer.
Me, photo taken by Zach a few weeks ago, during a much warmer weekend.
P.S. The City Museum in Raleigh is not worth the $5 it costs to enter. It is one room only half full of an exhibit, which mainly consists of bad copies of photos pertaining to the evolution of media in the Raleigh area. I had no idea that this was the case when I decided to go there. I was documenting a museum exhibit in preparation for an assignment in my history class. My professor required photographic evidence of our presence at the museum we chose to document an exhibit at.
My dad was admitted to the hospital tonight until they can set up hospice. I knew this was coming. But now it’s real. We’ve turned a corner that we won’t be coming back from. He can barely speak or move. I’m sure some of it is the cancer and some of it is the morphine.
I went home to Chicago right before Christmas. My dad had spent three weeks in the hospital undergoing radiation. We had a nice visit. I smuggled him snacks from the vending machines and made sure he had enough Lipton tea for the rest of his stay and I tried to make him laugh as much as possible. I hoped the radiation would make a dent in his quality of life, but it didn’t. After he went through chemo I had no illusions about where this was going, but there is that tiny part of you that wants more. Now, now I just don’t want him to suffer anymore.
After radiation, he was discharged on, Christmas Eve. I talked to him when he got home and one last time since, about two weeks ago. He’s just had such a hard time talking, mostly slurring. Our conversation on Christmas Eve didn’t go very well. He was so upset, broken, tired, and sad. He isn’t a man of many emotional words. But when I saw this post on BoingBoing tonight I clicked over to Lisa’s blog. I read through it and found a post titled “Alone.” Not in so many words, my dad told me the same thing the night he was discharged. I wish I could do more for him but sometimes it just isn’t possible. All I can do is love him.
If you get a chance check out Lisa’s blog. It touched my heart, it gave me a little more insight into my dad.
During the Spring I sewed over 200 feet of bunting for my wonderful friend’s wedding. I ended up burning my arm really bad, hastily ironing. Since I finished that project I haven’t really sewn anything. Anyway, a friend of ours is moving and I made her a bag for a going away present, and I made another one for an already far away friend. I forgot how easy it is to get lost in a project. I love it. And it’s even better when you can give them away to people you like.