?xml:namespace>As the title says this blog is one man’s effort to make sense out of his journey fighting melanoma. I have enjoyed reading some of my fellow melanoma warriors’ blogs and thought it might be an interesting way to share what this journey has been like for me. If you find this interesting great, if not that’s great also. Selfishly this is more about me getting this out and moving on from being a cancer patient to being a cancer survivor.
Let’s clear up a few things. Yes, I know how to use spell check and no I don’t always use it. I majored in accounting, not english. I have always been a below average writer, which is why I find the therapeutic value of doing this surprising. I think for this blog to make any sense you pretty much have to go to the archive and start from the beginning which is titled “Life Is Good”
I am not a doctor or medial professional of any type. My blog is not endorsed by any medical professional or facility mentioned in it. Every decision I have made about my care was done after careful consultation with my medical team. Decisions I have made were right for me but should not in any instance be considered right for anybody else. I don't recommend taking medical advice from an accountant.
Friday, May 27, 2011
Thursday, May 19, 2011
Monday, May 9, 2011
Wednesday, May 4, 2011
Sunday, May 1, 2011
From a process standpoint the self administered shots were going well. It only took about 5 minutes to mix the two bottles of powder with two bottles of water, suck it all into one syringe, change needles and shoot it into myself. Not very complicated. Physically I was doing ok. I was tired and all I did was work and sleep but that’s kind of what I expected. The fatigue was overwhelming at times. Very difficult and no amount of caffeine seemed to help. I fell asleep sitting in the car in the garage after I pulled in, the Taco Bell drive through (not a Livestrong day) and at my desk. I could sleep anywhere and on my trips back and forth to Jersey I was asleep before the wheels even left the ground. That I could deal with but the mental strain was becoming much more difficult to fight through. My memory was pretty much gone and my ability to process information and data was really going downhill. A week ago today I was preparing to come to New Jersey for work this week. Now this is going to be a two week trip for me and I needed to bring enough interferon for 5 treatments. I was going to need two bottles of powder and two bottles of liquid for every treatment. It sounds simple enough, especially for an accountant who has spent a good portion of his career working as an analyst. I stared at the box of little bottles for about five minutes before I finally had to put the bottles together in groups of four until I have 5 groups. I felt like an idiot. This really wasn’t very complicated. I called my Oncologist on Monday of this week and left him a message that I had had enough and was either going to have to go on disability or stop treatment, I couldn’t function at work any longer or be productive. I knew that I wouldn’t be able to take a break and go back. He called me back and we had a good discussion about where I was at and how I was feeling. He supported my decision and said it was time for me to feel human again. I agreed and skipped my treatment that night. I haven’t put any of that crap in my veins since. I called my kids that evening and told them of my decision. My girls seemed concerned by the news and I look forward to getting back home to visit with them in person. I think when they see how much better I feel they will understand. They think this stuff was going to save my life, when that’s not really what it does. I let the rest of my family know after I told my kids and they were all very supportive. I have been off for 5 days and I cannot tell you how much better I feel. Mentally I felt better almost immediately. My memory is much better and I can function at work again. I don’t have any regrets about starting Interferon, not do I have any regrets about stopping. I did everything I could and fought like hell to stay on it, but just couldn’t do it anymore unless I went home and spent the last 8 months doing nothing. Maybe it would have gotten better, maybe not. In the end, this week I just lost the will to fight this crap anymore. Once I had given up this fight was over. The one regret I do have is that I didn’t start antidepressants at the start of this treatment. All the doctors I talked to say I should, everybody I met who had been through this said they had to take them but I was determined I wouldn’t need them. Would it have made a difference? Who knows, I don’t think so but it may have helped me deal with it better. I also don’t think the NG kicking me to the curb was the reason either. It didn’t help my attitude any but didn’t make me less willing to fight through this. I am at peace that I did everything I could and it really became a quality of life and risk/reward decision.
Interferon treatments were just as bad as the doctors had warned me. The first month I was prepared for, what came afterwards I was not. Going to the infusion suite will humble you very quickly. As sick as I was there were people in there who were in much worse shape. I would go in every day, get weighed and do the blood pressure thing, and go get hooked up. I would get a new IV every Monday and they would also draw blood every Monday. You would think that they could do these two steps together but no luck. I have terrible veins and they never got a vein on the first try. I hated Mondays and always felt like a pin cushion when it was over. They would leave the IV in all week which was nice. I would get a bag of fluids, a bag of Interferon, and be sent on my way. Two hours later I was as sick as a dog hoping that I would go to sleep so I could miss most of the side effects. My youngest daughter was my lifeline during this time. She would get me my meds, bring me food and drink, ….. She was wonderful and I am sure it was scary for her to see me in this condition. To her credit she never let on that she was afraid but I am sure she was. I also think she was relieved when the NG would arrive and relieve her from duty. They kind of tag teamed taking care of me. My older daughter would come over when she could and brought my granddaughter to see me sometimes. She always cheered me up and her energy is contagious. I love them all and seeing them reminded me why I was doing this treatment. I am such a blessed man. I was able to work some while I was going through this treatment, but towards the end it go more and more difficult. One of my favorite memories was about halfway through my treatment we got a foot of snow one night and had 40 MPH winds and huge drifts. There was no way I was going to be able to shovel the driveway and make it to my treatments but at about 6:00 am the next morning I heard somebody shoveling and looked outside and there was my ex wife and her friend Dave shoveling my driveway before they both went to work that day. It was 5 below zero and the drift in my driveway was at least two and maybe three feet high. As you might gather from the Ex part in ex wife we haven’t always been very good to each other. Trust me, she doesn’t owe me anything. She is mid 5 ft range and about 100 lbs soaking wet. She looked so funny all bundled up and looked like the kid from “A Christmas Story” as she was shoveling. This actually wasn’t the first time she had shoveled for me this winter but by far this was the worse conditions. She has been very good to me during this I and I appreciate it. The problem I had now is that they don’t usually plow my street for a few days after a snow so there was no way I was going to make it down the street. One of my sisters called and I was telling her how I didn’t think I was going to make it to treatment because my street was impassible. This was very distressing to me as I really wanted to finish this treatment and if I missed I would have to go in on a Saturday and take get a treatment which meant I wouldn’t get my normal weekend recovery time. A couple of hours later I get a call from the fire department and my sister had called the city, the police, the public works, and finally the fire department where she found a sympathetic ear and they were going to come over and plow me a path to the main road so I could get to my treatment. He asked me what route I took to get there and sure enough they came over and plowed me a path so I could get to treatment. I really appreciated everything that was done for me that day and will always remember it. As somebody who hates asking and accepting help this day was very humbling. I made it to treatment and the ladies at the infusion suite were surprised to see me. I wanted to mention them during this post. They really are angels who are walking among us. The compassion they show all day every day was simply amazing. The nurses always had a smile on their face and would sit around and joke with you or sit there while you whined and complained. They have to get sick of hearing it, but you can’t tell. To be honest I felt guilty complaining in there. There were so many really sick people. Don’t get me wrong, I had my cross to bear, but mine seemed smaller than some others. I think god there are people who can do jobs like this but I don't think I ever could.