My cancer diary

I was diagnosed with stage 4 diffuse large b cell lymphoma 1-23-06. Lymphoma is a cancer that involves the lymphnodes in your immune system. It took nearly a year of being diagnosed with all manner of things until the nail was hit on the head. It was diagnosed as stage 4 since it involved my liver. Since that point, life has certainly changed and become a true
learning experience.
The treatments for my lymphoma have been a joy. The preferred method of delivering chemo is through a port inserted under the skin in your chest. The port is used because the some of the chemo drugs can do a lot tissue damage if they leak outside of a vein, and your veins have a tendency to collapse after so much use for I.V.'s. Usually this is a simple out patient procedure, but in my case I ended up with a collapsed left lung, and after a 2 day stay in the hospital, I was up and running so to speak. After 2 weeks, the lung collapsed again. In one way it was a good thing since the x-ray showed that the port catheter had dislodged from near the right atrium of the heart and ended up in my jugular vein with a little hook in it. The procedure was done again and has held fine to date. Chemo itself is basically a controlled poisoning of your body to kill cancer cells. The side effects of some of the drugs can be extreme. In the case of Rituxian, the first time it is administered you have to be watched because you can go into what is referred to as "rigors". What happens, is, your heart and lungs try to shut down and you shake, after that happens they can figure out how much pre-drugs to give you so you can tolerate the Rituxian.
With chemo you do loose your hair. I have lost hair in places I didn't think you were supposed to loose hair. Most people do become very sick from the chemo.
Treatments were going along fine, and the oncologist was ready to pronounce me in remission, when one of tumors on my colon died and infected part of it. I went to the E.R. with severe abdominal pain, nausea, and vomiting. I ended up having emergency sugery to remove 2 and1/2 feet of gangrene colon. After that was over, my oncologist sent me to a friend of his at Duke Medical Center for a second opinion and how best to continue treatment.
The oncologist at Duke sent me to see the Chief of the Adult Bone Marrow Transplant Clinic there. After different tests and discussion, my chemo regime was changed to a more aggressive one and I have been set up for a stem cell transplant, that requires I spend 30 days at Duke to have done. I have gone from a 90% survivability rate to a 40% survivability rate in a matter of 6 weeks. These new treatments are supposed to get me back up to a 70% survivability rate.
So far my treatments have cost in excess of $160,000. With the stem cell transplant I expect that to double. I have been unable to work for most of these 8 months, so I am now as broke as a church mouse. It is difficult to live off of short term disability to begin with. Insurance companies make applying for long term disability so difficult, I am sure they are counting on you giving up before you finish the process. I have also found out that as a middle aged middle class
American citizen, I qualify for nothing. The only assistance I have been able to get so far has been from cancer advocacy groups. Applying for Social Security Disability has been a truly trying experience. According to their own web site, it takes 120 days minimum to process your application and the probability of you being approved is basically a crap shoot. Their web site also states, using an attorney gives you a 90% chance of approval. That is why you see all the attorney adds on the T.V.. After you have been denied they will take your case for percentage of the back pay which can be considerable seeing as how it can take as much as 10 months to win your case. In the mean time besides the cost of your treatment, you have co-pays to make, drugs to buy, a roof to keep over your head, utilities, and food to buy. Even though it is hard on me, I can not imagine how it must be for people with no insurance, the elderly on fixed incomes, and those that have no care givers to help them. In my opinion we have a healthcare system badly in need of over haul. Not the kind of socialized medicine the Democrats call for, but a meaningful over haul of an abused and at times corrupt system.
A catastrophic illness requires a care giver, some one to get you where you need to go for treatments, at times speak for you, and take care of your basic needs on occasion. There are times you are so sick you can't do for yourself. I am fortunate to have a care giver that is always there for me and goes above beyond what is necessary to help me. I am also fortunate to have a few good friends that look after me.
I started this blog to give me something to do besides watch T.V. and have meaningful conversations with my pets. I thank you for reading and having this opportunity to vent my frustrations. I plan to continue with the blog as things progress and maybe add a few other things to it as well

Willie