Surviving Cancer, It is not what you think.

     It is now six and a half years later and I must say it has been a truly interesting ride. I have left all of the original postings as is, spelling errors, grammatical mistakes, political rants, so that you may see the changes in attitude and perspective.

     After the stem cell transplant and being made for the most part whole, the journey to see if you go in to remission for five years,"cured" or if you relapse. I was told if I did relapse, it would be in the first 18 months. This period starts off with scans and tests every three months for 2 years then drops to six months then to once a year for the five year period. This protocol is tailored to the individual and type of cancer they had. In April of 2013 I past the 5 year mark.
How is being cured? It is a mixture of serendipitous accidents and cold hard truths. I will back up here a bit and sum up what happened beginning to end. I spent a year being misdiagnosed with everything from intestinal flu, diverticulitis,
gall bladder problems, appendicitis, had surgery for the gall bladder and appendix, and the last was Mesenteric Adonitis . I had become a fixture at the local emergency room , so much so I knew everyone there by name. You know you have been to many times when you know everyone. The last trip I took to the E.R. I decided I was not leaving until somebody found something. I was in my room at the hospital when the surgeon came by and asked me why I was there, I told him what the problem was and at that time my room mate asked, doesn't the left side of his neck look bigger than the right?  He started to palpate my neck and said, " I want to do a biopsy of that area". What he found was a necrotic Lymph node, of which there was so little left he didn't think the pathologist would be able to make a determination. He did determine I had Lymphoma, not what class or type, just that it was not Hodgkins. My doctors at the time were in the room when the surgeon came in, their response was lets not go there yet, and the surgeon just lost his mind, in a most unprofessional manner. He asked what is wrong with you two! He has cancer and now you want to debate the diagnosis! He said some other unflattering things, spewed the odd epitaph, and left. I no longer have those doctors and good riddance to them. Now things started to happen.
     I was diagnosed on 3, January, 2006. On 6, January, 2006 I went to a guy he knew. Dr. Holt, after a bone marrow biopsy stated I had stage 3 Large B Cell Lymphoma. He and his clinic worked for a while, but when everyone thought the majority of my tumors had receded enough to to go towards cured, I crashed. I ended up in the E.R. at Dosher Memorial Hospital, because I was in enough pain I could hardly move. The E.R. Doc. Said," we don't do cancer patients here". So. my room mate slash caregiver says I will take him to Grand Strand in Myrtle Beach. He said well let me see what the surgeons say. I had been there for six hours or more by this time, and the E.R. Nurse popped in and said you have been here a really long time and you are getting irritated and antsy so I am going to give you a little sedative to help. Once I woke up from the comma I saw I had been opened up from Sternum to Pubis. The first this I said to myself was well this is different.  I later found out I had a tumor attached to my colon at the cecal valve junction that had died. Now, when the scans are done to find tumors and such, a radio active tracer is used; the tumors will take it up and "glow" on the scan. This one didn't because it had no blood flow, the appearance of it getting smaller was from the fact as it died it stopped taking up the tracer. What was removed from my abdomen was a 14X19 CM tumor, two and half feet of gangrene colon, the cecal valve, and half the ileum. My new plumbing out right sucks. The surgeons told me if, my room mate slash care giver had tried to take me any where, I would have died on the way.  Back to Dr. Holt after a 6 week recovery period.
     He decided that since that problem came about, he would send me to a guy at Duke, the head of Oncology also named Dr. Holt. He and his crew tested and checked and decided I needed to go see a guy he new, Dr. Nelson Chao, Head of the Duke Adult Bone Marrow Transplant Center. I went to see him. On the first visit, I saw a Fellow, studying there and he had a tall thin raven haired P.A. with him. As soon as he spoke in his heavy Ukrainian accent, I just fell on the floor laughing. He said lets get all the Rocky and Bullwinkle jokes out of the way. He said he was from Kentucky, but I digress. After tests, and such I saw the great OZ himself. The first thing he said is you should have died six months ago, but you are still here so lets see what we can do. I was told with out a Stem Cell Transplant, (STC), I had a 20 percent chance of survival, with it, a good 60. I responded, that beats Vegas odds so lets do it. After his Bone Marrow Biopsy and tests I was typed as having stage 4 aggressive diffuse Large B Cell Lymphoma. I had involvement in my abdomen, liver and lungs. I still have nodes in my right lung, and lesions in my liver, but they have been inactive for sometime. for the rest of the cancer journey read the other posts.
     Before you begin those, I will give you the run down on where I am currently at. The harsh chemo. I was treated with has left me with Neuropathies in my extremities, a severely diminished short term memory, learning disabilities, constant fatigue, PTSD, arthritic joints, poor bowel control, vertigo, testicular atrophy that I have to take large amounts of testosterone for, I am now a bilateral aphake due to large amounts of prednisone I took I developed systemic cataracts,a slow form of kidney failure, and Cardiac Aphib. I can no longer do the work I used to do, so, I now live on disability while I try to find something I can do to supplement my disability or make enough money from to live on.
Beginning to end, I have had, over 30 blood tests for any and everything you could imagine, three BMBs, 22 Cat and Pet scans, enumerable Xrays, three Lymphectomy/ Biopsies, two port insertions, one Double Lumen Hickman, five surgeries, one lung collapsed twice, and the chemo is making my teeth rot from the inside out.  Such is the cured side of cancer. Some of the items in the body of the blog, I relate second hand as I have no memory of them. Dr. Dementia,(her personalized license plate), told me it is best that I didn't remember.
     Cost. Treatment, 33,000 dollars a month for 14 months, STC, unknown as no one would tell me anything other than it is paid out of a global fund. That tells me it cost a nearly infinite amount of money.  80,000 dollars for surgeries. Six months in I lost my job and insurance, had to rely on medicaid, donations of therapy drugs from the Pharma companies, and the kindness of strangers, until Medicare started which was nearly nine months after applying. since I have been "cured" the copays for the drugs I take run 200 dollars a month until I fall into the medicare gap and then jumps up to almost 350 dollars a month. there is one drug I don't take for the simple reason that the copay for it is 500 dollars a month, in the gap it is 1,052 dollars a month.
     Emotional cost. You learn quickly who your friends are and aren't. Everyone is so concerned when you are diagnosed. How will you get through this? How long will it take you be normal again,( you never will). Are you going to die and all of the stories about people that had such and such and died. I a little hint for the general populace, don't do that shit, it is not helpful. Once they find that you can be come a burden and you are not going to come out if and be fine in a few weeks, they disappear like an ethereal mist, then you find who your true friends are.   After you have gotten through the responses to being diagnosed, have gone through, the disbelief, the grieving, and the being pissed off. It comes down to the fight and it is a fight. Chemo, surgeries, and scans for me, others have radiation treatments to deal with. IT makes you sick most loose their hair and I don't mean just the hair on your head, every hair you ever had on your body. I admit I kind of liked the hairless part except for the head hair. I didn't have to shave for a good year, not having hairy legs arms and chest were nice, kind of sexy even. You have to become hyper vigilant about infections of any kind. You lose your immune system. You can't eat at a restaurant, you can't eat fruit that can not be washed and peeled, can't garden, can't pet your animals without washing your hands, they can't give you kisses or sleep with you. If you develop a fever you go immediately to the hospital, as you can go from having a slight fever to dead in a short time frame. I had a finger prick blood sample taken that became infected and became so severe I almost lost that finger. It was a good finger too. You become almost unable to function the chemo takes such a toll on your body. There were a few times I was told you should not do this and drive yourself around or operate dangerous equipment. I learned that the hard trying to drive home and nearly killing myself and untold numbers of others in the process. I stopped at a little store with concrete filled pipes out front. It they weren't there I would have stopped at Bob's counter. To give me something to do I started fencing in my small back yard,(32'X72'). I had my circular saw out and cutting the first board the saw stopped and I went through the whole routine of figuring out why it stopped before I realized I had cut the cord, I did that twice. It took me 14 months to build the fence. I was so fatigued I could work slowly for 2 hours and had to stop. The next day I would sleep almost all day. You largely can't participate in the world, and your world becomes awfully small.Not being able to work was hard for me. I had worked 10 hours a day, drove 2 hours a day to and from and made good money, now I could barely walk to the stop sign 2 houses down from mine. If you don't work for a good company with good management and benefits, you will lose pretty much everything. You find that all of these wonderful programs to help us all keep our homes, and our ability receive health care are bull shit, you will get nothing but scammed or told you have to much money for this program or that program. You  are once again on your own. Everyone will tell you, they can't take you dignity. They will try and come damn close. I went back to school to try to better myself. It was incredibly hard to do, with the learning disabilities I had developed. I took 4 years to get an Associates of Science Degree, as I had to go so slow and there were times I had to stay out a semester or 2 because I couldn't even afford gas to get to school.  I found out after I had a Neuropsych evaluation done that my short term memory is now non existent. I can no longer read and retain anything and give any details about it. I know I read it, I can give you the gist of it, but I can not pull out any specific information, I have the same problem with verbal instructions. It seems now the only way I can learn is to touch it. I can still learn by touch. My memory is now a little note book I write down everything I need to remember in. I also have a PTSD problem, which I don't really understand, the Psychologist tells me I have the same PTSD profile as a combat veteran, again I don't get it. I must be depressed she says, I asked her why can't I just be frustrated and pissed off, but apparently it is mandatory. In the end you are left twisting in the wind. Those that have good support systems can deal better. I spend the majority of my time chasing money and trying to find a way to make money to live on. There comes a point that you either give up or you suck it up and do what has to be done, adapt and over come. It just takes a while. I will fight my way out and I will win, or I will die in the process. Another thing I have learned is that I do not fear death. It is a freeing concept. Yes I will die and you will die, it is as much a part of life as being born. The only thing I don't want is to leave a mess for others to clean up and the burden of a funeral. It is nothing to fear. Cancer survivors are not free. You become very conscious of your body and what goes on with it; you look over your shoulder for the rest of your life to see if "it" is coming for you again. must of us fight through pain and  a diminished self daily. You have a new, or different normal. You will never be what you were, but you can be a fabulous version of a new you.
     Politics and religion. I am a very spiritual person, but I will have no truck with man's religions. Spiritualism brings people and cultures together. Religion seeks to divide people and control them. that is why the founding fathers saw the need to separate religion from government. Religions have driven the politics of  countries for millennia with abysmal results. More blood has spilled in the name of religion than any other reason. People that tout their religion avow it rightness are the most divisive people I have ever met. People go to be good church going believers one day a week and become anything but the rest of the week. Instead of taking the teachings of love and care for one another which is the basic tenant of  all religions. the leaders only pick those parts that separate us and lead to hate and a false idea of superiority. Teach your children to embrace everyone, and to fear nothing.
I am now an independent politically. Both parties a peopled largely by ego maniacal idiots that believe in their intellectual superiority and you are a peasant simpleton that has no idea how to conduct your life. There is one of these "leaders" that thinks the 172,000 dollars a year he makes to work 160 days a year with a cadillac benefits package and outrageous retirement plan is not enough. for his part time job. The cutting of entitlements should start with these people. I don't mind that senators and congressmen make a good living while they work, but they should work for the benefit of us all and not the benefit of themselves and corporate america. The collusion and treasonous behavior must stop. The dumbing down of America must stop. Education has to become a real priority not lip service. We need to fix our own back yard before we worry about everyone else.Our children need to learn real history, not the revisionist garbage that fits an agenda. That we have people that graduate high school that can not read or write is inexcusable.  We need to keep the promises made to our veterans and not cast them aside. We must help the poor pull themselves up. The so called job creators are not that, they are job exporters. The only jobs they have created are for domestic help, gardeners, drivers , and yacht crews. The middle class with disposable income are the job creators. When people buy stuff, you have to make more stuff, which requires people to be hired to make the stuff, that is where economic growth comes from. It is not government or corporations that will save the economy, it is mom and pop. Bankers have to be brought control period, they have no ability to regulate themselves. They have become the largest criminal element in this country. Remember we don not live in a democracy. We live in a Constitutional Republic, with democratically elected representatives. With that in mind, the Bill of Rights are not a list of rights granted to the people, they are the rules government must work within. Government and law can not supersede the rights protected by it. You can not give any right away or allow them to be taken. If one is lost all are lost. They do it by creating a divisive atmosphere that requires taking sides or become a one issue voter, don't fall into that trap. Don't accept, know. If a politician speaks, they speak lies until you verify other wise. Educate yourself and vote.
     I could say a lot more but I will leave it as it is. Support research and your favorite cancer person and caregiver as well. the caregivers take the same trip.