All I Want

Nov. 19 / 10 0300 PST The Song Of The Day Is : “All I Want” by Joni Mitchell . ( a dam pretty song) The cancer. The cancer in my lung has taken a back seat to the cancer that is in my lymphatic system. Both it and the cancer in my lung are aggressive! Prior to the last sessions of radiation therapy a golf ball size lump suddenly manifested itself in matter of days. I can feel the twinges that let me know that it is coursing through out my body. I shouldn’t and can’t ignore the pains in my head any longer. When the cancer goes to my brain it is going to be an extremely ugly death. ( I carry a phone with me even if I go from one room to another , one oncologist told me that when the small cell lung cancer metastasizes to my brain that the debilitating effects can be immediate , I am alone and I fear being paralysed , lying incapacitated on the floor until I die , my body being discovered because of the smell. This is a realistic concern as last year around this time I spent in excess of 50 days without contact with anyone , Things have changed a bit now . Home care nurses call and drop by twice weekly .However if I do not answer the phone it would probably be at least a week or two before they would decide to physically check things out.) . If the tumours in my lung end up killing me , that will not be pretty either. It has been just over a month since my last radiation treatment. In regards to the pain either God is making things difficult or the devil keeps prodding me. No matter what type of pain I experience and regardless of where the pain is it becomes worse when I lay down. I have to keep standing and/or pacing to lessen the discomfort and pain. In the past I have spent weeks standing and pacing , laying down and passing out for less than an hour a few times a day , exhausted and barley able to stand. I am not exaggerating. As I have said before the pain meds “numb” and bring some relief ( a sharp pain just shot through my head and scared the crap out of me , wheefff ! I’m back now) but the discomfort and pain is still there and laying down for any length of time is impossible. I am my own health care advocate. With our health care system I will not receive any care unless I ask for a specific type of treatment or care. There usually is no one to advise me on what if any care would be helpful and /or available (recently I have been fortunate enough that a DR. at the cancer agency has taken an interest in my welfare has made himself available for any questions that I might have). My concern now is should I ask for them to radiate my brain and what would the side effects be ? It there experimental chemotherapy available ? If there is how do I get the loot and help that is required to make through the chemo. Is it the dental pain that is causing the headaches , or is it the cancer? Where do I get the loot and am I going to be able to get to the dentist? How do get to go see the doctors when I do have an appt. ? My diet and supplements have been as important(sometimes more so) and necessary as any care provided by the health care system. Without them I would have died long ago. They are necessary to build up some strength in order to receive any treatment from the cancer agency. All treatments that are available trough the cancer agency are extremely hard on the body and are life threatening in their own way. I already run out of the dietary needs every couple of days and the supplements every couple of weeks. How do I get the loot to get the supplements and how am I going to be able to get them in a timely fashion ? I have been without one supplement now for a few days and am suffering because of it. Another one runs out today . Am I going to make it through the day? These are all questions that weight on my mind 24/7. I know that I have managed to stay alive much longer than anyone has expected. I am sill alive however and plan to keep fighting hourly/daily. Because of the cancer I am not able to do much. I stress very day as it is akin to pulling a rabbit out of the hat to try to fulfil my needs , make the right decisions as far as any therapy that I pursue , how to do something enjoyable to inspire me to keep living after I work my but off to get those few hours of relative comfort. What a waste that all the energy goes in that direction. I have logged in the forest, worked on the log booms while loading ships. Extremely dangerous hard work. Friends were seriously injured and killed. I have wracked my brain out working 40 to 50 hours a week at a desk for General Motors, going to school and studying in every spare moment. I worked running a business where 70 or 80 hours a week were not uncommon. I worked as longshoreman , again friends and acquaintances getting hurt and being killed often. I have been in situations where my life has been on the line and my body has had severe pain inflicted upon it intentionally. All of that combined doesn’t compare to the amount of work and effort that it took and takes get through what I have been going through on daily basis for over two years now and continues to get more difficult by the day. Having to do hard physical and mental work for 12 hours a day 7 days week month in month out would seem like a vacation compared to what it takes to get through a day now. Although I should be and am grateful for the help that I have received. I feel that I don’t deserve having to stress every day wondering how I will go about getting the things that make living for a few more days weeks or months possible. It is now 0710 . I have been up since 0300. I have taken my pain meds , concoctions and have been moving around the best that I can. I have had my mush for breakfast. If the effects of the cancers do not debilitate me within the next few hours , if I concentrate ,pace for awhile and move my body around I might get a couple of good hours. I can then out on the “Smiley Face” , try to enjoy myself for a couple of hours , or use the couple of hours trying to figure out how to get by where I am (today I have to figure out how to at least get one of the two supplements that I require) , decide whether or not to pursue more maintenance therapy and if so figure out the logistics and where to get the means to make it all happen. I’d rather be writing letters , poetry , enjoying the beauty that surrounds me and looking after myself. C’est La Vie. (well enough whining for now , as was once said in a movie “get busy living or get busy dieing” , unfortunately this is not a movie and I have no choice about the dieing part)