My Cancer Story

Like most Americans I am concerned about the future of healthcare in America. With all the news stories, pundits, and protests both for and against the health care reform bills going through congress it is hard to figure out the truth. I think most American’s outside of the politically active minority just wished the issue would go away because they are tired of hearing about it. I know I do some times and I enjoy politics so I know that folks that don’t like politics must be sick to death of it. But I have a personal story to tell so I hope you will patiently hear me out before you move on to another site with something more interesting or less decisive to read about. It’s a little long but I hope you can bear with me while I tell it.

In the fall of 2006 I was working as an independent contractor for a company in Dallas Texas. As a contractor I didn’t have health insurance. I knew that before taking the job but figured that I could get away with it since I was relatively young (42) and in pretty good health (or so I thought). In August or September I noticed a bump on my left cheek just in front and below my ear. I didn’t think much of it at first but I kept an eye on it. After a month or two I started to wonder if I needed to get it checked because it was still there and wasn’t getting smaller. In November I noticed a second bump and decided that I needed to get it checked. I wasn’t very worried because I didn’t have any other symptoms but I just wanted to rule everything out. I figured it was a Lymph Node and my doctor would give me some antibiotics and I would be okay.

I made an appointment and went to my general practitioner in mid-November. When my doctor came in to the room and I explained my bumps to him he said what I thought he would say, that “they were probably just a couple of swollen Lymph Nodes,” but he wanted to take a closer look just in case. As soon as my doctor saw them and touched them his demeanor changed drastically. It is hard to describe in writing but I will try. His disposition before touching them was friendly and a little jovial. He seemed to expect that he would have me in and out quickly and I would be fine. You know how doctors are when your there for a routine visit. Well as soon as he palpitated (squeezed and manipulated) the bumps on my cheek he got very serious. He almost seemed to pull his hand away from my cheek the way someone would do if they had just touched something they were nervous about touching. The look on his face went flat. I could see the concern in his expression. At first all he said was, “Lewis, you need to get those checked by a specialist.” He hesitated and continued, “I am not trying to scare you, and it’s probably not, but we need to rule out cancer.” Writing about hearing those words that day still make me shutter. My diagnosis wasn’t confirmed that day but somehow I knew that it was Cancer. I tried to play it off like I wasn’t worried but I was scared to death. I can’t explain it. Other survivors know what I’m talking about. The feeling is primal, the fight or flight feeling is the closest I can get. One of the first thought that went through my mind was: I don’t have insurance, if it is Cancer how am I going to pay for it? Am I going to be able to find a doctor or hospital that will see me without it?

Luckily for me my doctor got me an appointment to see an ENT (Ear, Nose, and Throat) specialist that he knew. I have to say that this doctor was a God-send. He was everything a person in my situation could hope for. While we discussed money over the period that I received care from him it was never the prime issue. His focus was always on me and my care. During my first appointment he checked the bumps again and said that it probably wasn’t Cancer but he sent me to get an MRI just in case. When I returned with the MRI slides his confidence subsided because the slides showed that the two bumps where separate rather than two parts of the same growth. He said that the bumps appeared to be located in my Parotid Salivary Gland and that most tumors in that gland were benign but he wanted to make sure. He decided to do a “Fine Needle Biopsy” to see exactly what tissue was involved. Of all the procedures I had throughout all of my Cancer treatment this was the most painful. It HURT a lot. I’ve had surgery, bone marrow tests, chemo, and radiation but nothing came close to hurting as bad as this. When the tests came back my doctor seemed relieved. He said that the tests indicated that the tissue involved as lymph node tissue and he said that was a good sign. He told me that I had a 98 percent chance that it wasn’t Cancer. This was right before Thanksgiving and he told me that I could feel confident that my bumps would probably start to shrink and he recommended that we wait till Christmas and check them again. The doctor gave me the option to have surgery to remove my Parotid Salivary Gland but warned that there were risks of facial paralysis with that type of surgery so considering my odds he recommended not having it unless the bumps didn’t shrink in a month. I left the office unconvinced but I didn’t want to make a rash decision. He seemed so sure of it and the odds were in my favor so I went home. In spite of the fantastic odds the situation tormented me throughout the Thanksgiving holiday. The following Monday I called the doctor to ask him if we could precede with the surgery in spite of the odds and risks. He said that we could and scheduled me for the following Wednesday. Please remember that he knew that I didn’t have insurance but he didn’t hesitate.

On Wednesday the 29th of November 2006 I had surgery to remove my left Parotid Salivary Gland. I came through the surgery with no serious side effects. The doctor did an excellent job. I went home the following day to recover and wait for the biopsy report. Two days after the surgery my doctor called and asked if he could come over to my house to check on me and tell me what the report said. On Friday Dec 1st 2006 I was officially diagnosed with Follicular Lymphoma, a slow growing but incurable form of Cancer. Needless to say I was devastated. The doctor assured me that most people with this type of Cancer live for a long time. He said that he was obviously glad that we had performed the surgery against the odds but he wished that I had been wrong. I told him I did too.

So there I was officially diagnosed with Cancer, already thousands of dollars in debt for the doctors visits, tests, and surgery, and I didn’t have insurance and wouldn’t be able to get insurance that would cover my cancer bills because now my condition was “pre-existing”. You have all heard that phrase bounced around as one of the primary reasons for passing health care reform. Well let me tell you, I’ve been there and it was scary. I didn’t know what I was going to do. On top of that, I couldn’t legally perform my job while undergoing Cancer treatments. So now I had Cancer, I didn’t have insurance, and I was out of a job. I felt like I had fallen off a cliff and I didn’t know how far I was going to fall before it was over. I didn’t think I had any options. I was so scared that I wouldn’t be able to find a doctor, or a hospital to help me. I didn’t know how I was going to feed my family or pay my bills. To be honest I felt complete lost and helpless.

For a few days I did nothing but rest and contemplate what my options were. My wife started calling hospitals and doctors. I started researching my type of Cancer on the internet and looking for hospitals that specialized in my Cancer. I read Lance Armstrong’s book “It’s not about the bike.” All the things that you would expect someone in my situation to do. For a couple of weeks nothing seemed to happen. I was beginning to wonder if I was going to find an Oncologist and hospital that would treat me without insurance. I started to look at the treatment options that were recommended for my Cancer. I noticed that they involved Chemotherapy and Radiation. I noticed a new drug that was recommended called “Rituxan” was proving very effective in treating Follicular Lymphoma but I also noticed that it was very expensive, as much as $10,000 a dose. I wondered whether even if I found a doctor and hospital would I get the latest treatment considering the fact that I didn’t have insurance. I felt like I was slipping farther and farther down into that hole. After about 2 weeks of researching and making phone calls the situation started to improve. My wife and I started narrowing down our options and we did start to have a few. Our local county hospital in Tarrant County, John Peter Smith, advised us that they did treat that type of Cancer and they had qualified Oncologists on staff that would treat me. M.D. Anderson Hospital, one of the best Cancer hospitals in the world, contacted me and told me that they would provide my care if my local hospital could not provide the type of care I needed, and the Veterans Hospital in Dallas Texas advised me that they would be willing to provide my care under hardship even though I didn’t retire from the military. Within a week I went from having no options to having three. I have to say that I was relieved. I wasn’t ecstatic because I still had Cancer but at least I had options.

I need to also point out that my ENT doctor, the one that did the tests and surgery knowing that I didn’t have insurance, came by my house three times during this period to check on me. I have never had a doctor do that much for me and probably will never again. He was incredible, but his care didn’t end there. While I was looking for options he was to, about the same time that I figured out that I had the options I mentioned above my ENT called me to tell me that he had found a doctor that specialized in “blood cancers” like the one I had. He said that this doctor was the head of the Oncology department at the Southwestern Medical Center in Dallas but also served as the head of the Oncology department at the Dallas VA hospital. He said he came highly recommended. I couldn’t believe my luck. It seemed like divine intervention and maybe it was. Let me tell you my wife does!

So in January 2007, just a little over a month after being diagnosed, I started my chemotherapy treatments at the V.A. hospital in Dallas. While the treatment rooms and procedures are necessarily non-private, the doctors, nurses, and staff were wonderful. When I would have to go in for a CAT scan I would have to wait in the hall rather than in a room. When I was getting my Chemo I sat in a room full of other Cancer patients but I got the latest with Rituxan. While I waited for an appointment I waited in a huge atrium filled with other patients suffering from all kinds of illnesses. While my time with the doctor was very short, they never made me feel rushed. They answered my questions and even changed my treatment plan based on my request. My radiation treatment experience was similar. I hated it worse than the chemo but the staff and doctors were great.

In May of 2007 I completed my treatment. I have had many follow up visits over the last three years and luckily I am still Cancer free. I am back at work and doing fine. I have insurance through my current employer and needless to say I am glad about that. I have told you all of this so that you could understand my position on the health care reform issue knowing that I am not speaking from a position of someone who hasn’t had to deal with the dark side of this issue directly. Health care reform is intimately personal to me. I know what its like to face a major disease without insurance and while it is scary and difficult it is not a death sentence as some like to portray it. We do have options here in America. There are systems already in place to help those who find themselves in the position I was in. There are doctors, and hospitals, and pharmaceutical companies that will donate their time, facilities, products, and money to help people who cannot pay. I know from personal experience. You might try to say that I got help because I was a veteran. While I would have to agree that my ability to get treatment at the V.A. was a result of my being a veteran, please remember that the V.A. was not my only or necessarily my best option. M.D. Anderson hospital in Houston stood ready to provide care if I couldn’t find it anywhere else. One of the best Cancer hospitals in the world offered to treat me knowing I couldn’t pay!

So, what’s my position on health care reform? I do think we need to fix some parts of our health care system. But not the parts that the folks in Washington want to fix. In spite of the fact that I heaped praises on the V.A. hospital staff in my story above, I would hate to see every hospital in the country begin to function in the way the V.A. does. While they do the best they can, they are still overwhelmed with patients and the types and quantity of care they can give is limited because of it. The V.A. hospital operated like a factory. As a patient you felt like you were on an assembly line being pushed through. While I obviously don’t thing that this affected the quality of my care overall, it still was unpleasant to be herded like cattle when your not feeling very well. It was difficult to sit in a room for hours staring at other Cancer patients, some of whom were not responding to treatment, and wondering. While you cared about them in only a way that other Cancer patients and their families can understand, you don’t want to have to watch as other folks struggle through those painful and sickening treatments. Going through yours alone is bad enough. My point is that while I don’t doubt the intentions of most of those who support health care reform, the point is: intentions don’t mean anything, consequences do! And the consequences of passing health care reform that would hand over our medical system to bureaucrats and politicians in Washington would be disastrous. You see, if our entire health care system was operated like the V.A. then the new and expensive treatment I received probably wouldn’t have been available. Some bean counter in Washington would have looked at the cost of research to develop that drug and weighed it against the small number of people who might need it and they would have decided not to provide funding for it. Patients at your local hospital who were not responding to treatment or who were very old would have a bureaucrat from the federal government deciding whether the system could continue to afford to treat them. Talk about frighting! The CAT scans and MRI’s I received probably wouldn’t have been as readily available to me  if our system was governed by bureaucrats in Washington. This would have lead to delays in my diagnosis which could have prevented me from getting swift and accurate care. The doctors that decided to provide my care without cost wouldn’t have been in a position to make that call if they had to work in a government system. Those decisions would have been out of their hands. Some faceless government employee who never meet me would have already made the decisions that governed what care I would or would not get before I ever went to see the doctor.

So as a Cancer survivor that had to find a way to get treatment without insurance I am saying without reservation that I do not support any health care reform legislation that hands any control over our health care system to the federal government. Any solution that gets between the doctor and patient will be detrimental to the quality of care they are allowed to provide. All we need is sensible reform in a couple of areas.

1. Allow insurance companies to provide care across state lines. This would increase competition. Competition will improve our options and drive down cost.
2. Encourage the use of Health Savings Account plans. These provide ownership incentives to the patient to seek out quality care at competitive prices. This would also reduce some of the monopoly that the insurance companies currently have within the health care system.
3. More doctors need to offer cost reduction for patients paying with cash. This would encourage more people to get HAS accounts. Doctors could afford to do this long term because they could reduce their insurance billing staff and they would get paid at the time of service instead of having to wait weeks or months for an insurance company to pay and they would have more leverage when bargaining with insurance companies about how much the insurance company will pay.
4. Tort Reform. I’m not saying that people don’t deserve compensation when a doctor makes a mistake but we need to do something about all the ambulance chasing lawyers who are leeches on the system.

In short, I believe that if we implemented these four simple solutions we would solve most of the problems with the current health care system with no detrimental effect whatsoever. In fact, these reforms would encourage competition and innovation. For the few that would still find themselves without healthcare coverage we could offer sensible solutions like I briefly described in a previous post titled: “Let’s assume we need to fix Health Care in America”. And as my personal story illustrates, there are already solutions available today for folks who find themselves in need of care but without insurance. Without “Health Care Reform”.

I know we have all heard and said this cliché many times before but it is very true here: “The road to hell is paved with good intentions.”

Take it from someone who’s been there.

LogicalLiberty