The Myeloma Kid

My Radiation and Other Fun Facts: My Radiation treatment has been ongoing for the past week and will continue until this coming Friday. (Ask me sometime about the fun with the radiation nurse. It's a good story and probably too long for the blog). It's really no biggie other than the extra time constraints. The treatments are about a half hour long and are focused on my right arm, left arm, and upper right leg (femur). They fitted me with a foam cast to make sure the x-rays are always focused in the same place and I now have these 3 sets of permanent tattoos so they can line up the x-ray machine. I always wanted tattoos! I was think more like tiger or a tribal arm band. But, for now I guess the small black dots will have to do "Hey, look if you squint it's a picture of the Earth from really far away!" ...er...ok. Like I said above, the time constraints are amazing. People think I'm off from work and I must have a lot of free time and figure I watch a lot of Jerry Springer (sorry people, not even in dialysis). The days are incredibly hectic and harried. Three days a week it's dialysis for 4 hour treatments. Two days a week it's chemo. And 7 days its radiation therapy. On top of that its numerous doctor visits with my kidney doctor, the oncologist, and the plethora (I love that word) of other specialists. A good example was Friday I had chemo at 9am, radiation at 11am (both at the University of Pennsylvania), followed by Dialysis for 4hrs at my clinic in Delran, NJ. I left my house before 8am and got home at 7pm....I'm both exhausted and thankful of this schedule because I don't know if I'd be able to handle a lot of down time. I'm not the most patient person and down time isnt always a good thing in my head. That's why I've been treating this whole thing kind of like my next big project. Doctor's appts and treatments are meetings and developing solutions to finishing the project. I keep detailed spreadsheets of my evergrowing list of medications (and when to take them). I keep detailed appointment books. I keep a list of all my expenses in case I can deduct any or all of my charges. I take notes and do follow up phone calls. The insurance companies can be a hassle (especially after they've bounced back $90k in bills to me). But again, I calmly call them back and we work things out (they think I'm on Medicare because of my kidney failure...most people in dialysis are on medicare and I got lumped in with 'em). It's how I keep going. I use the methods I did on a daily basis and I just apply them to a different project. Besides, disability is paying me to be sick so I better earn my money, right ;-)? What I am finding out about the Myeloma is it's a Pandora's Box of a disease because of my lowered immune deficiency. I can get anything at anytime. It's like the disease sits in me and goes, "what can I give Lance now"? My doctor's have me now on the look out for Shingles. Oh great! It's a disease with lots of other afflictions wrapped up inside. I don't know sometimes whether what I'm feeling, seeing, or experiencing is a side effect of a medication, or is it something related to the myeloma or is it a whole other illness. It's a great disease for the paranoid!!! So, right now, I get these lil' bumps on me figuring it's related to steriods and find out I gotta be careful for shingles....sheesh!! So, if it's not the disease its the side affects. The steroids I'm on make me feel like I can conquer the world in the morning and curl up in a ball at night. Oh, and don't cut me off in traffic...I'll have a couple of choice words for ya. As you can see, I'm learning how to manage this disease. It's treatable and not curable. So, I gotta learn how to live with it. I always wanted to be a Manager didnt I?? Thanks again for everyone's hope, prayers, and support. And thanks to those who've contributed to my MMRF walk (If you're still interested, drop me or email and i'll get you my address). All your well wishes and cards, posts, and emails really keep the smile on my face and the fight within my belly and let me know I don't have to do this alone. I truly love you all. Lance