The Myeloma Kid

Everything can be so exhausting: Cancer, dialysis, treatments, doctor's appointments, waking up, going to bed, and just plain living each day can be a drain. The physical side of it all is enough to wear me down. But, I think it's the emotional and spiritual side that can be just as if not more draining. What makes it more challenging is that I'm finding out I'm more about looking for that "big reward" after I've done some work in my life. I want the fireworks, the rock star job, or the that big lottery ticket (even though I haven't played it...lol). So, the feeling of expectations and entitlement while sitting in the middle of a soul-sucking dialysis session really can eat at me. I will say, for me, dialysis really sucks. I've said it before and I'll say it again; I hate it! It's the loss of control. It's the loss of health. It's feeling like I'm a cog in a machine. It's the absolute feeling of wasting time. 4.5 hours of connected to a machine that cleans my blood. Oh, I'm thankful it's there. It keeps me alive and hopefully...hopefully....somehow....it's only temporary (dialysis, that is). But, being 40 (soon to be 41) well...it's just such a life change that I guess I'm still getting used to. I counter-act all this by doing everything I have to do to keep and stay healthy. Doing things, anything, can be empowering. I do each appointment and treatment and realize that I've just completed another week of chemo and dialysis. I do more things for myself; paint, walk, read, bake, cook, talk to people and try to help out where I can. Like I said, I can look for rewards to be given to me in life. But, I think more and and more that we make the miracles happen. It's probably through our efforts that things happen. It's probably through extending ourselves that we truly get the the things we may need. Medically speaking everything is still moving forward. There are a lot of "if-this-then-this" scenarios that have to play out. The health of my kidneys may determine my bone marrow transplant schedule. The length of dialysis may determine how much and frequency I get a bone stiffner (you can read any joke you want into that) added to my chemo treatments. And, how many low-grade chemos I will need before I start some of the heavy duty treatments prior to the bone marrow transplants. The next course of action, though may be with my kidneys. I probably will need the Fistula access installed in my arm to keep on with my dialysis. It again is something I'm not looking forward to for all those acceptance reasons. But, it's probably the best thing I can do for myself. It will give me better and shorter dialysis sessions and help clean my blood better. But, it's another treatment, another surgery and another thing to know I'm still sick. So, we'll see... Love ya all, Lance

Some of the Results are In. I went to the oncologist on Thursday for my 3-wk visit. We reviewed earlier test results and compared them to past results. On the positive side, my kappa light chain (KLCs) proteins, the proteins that are in part clogging my kidneys, have dropped from 1,000 micrograms per liter (ug/l) to 200 ug/l. Though, normal KLCs range between 1 - 2 ug/l. So, it's a significant drop and hopefully we continue to see good decreases so they get under control. Conversely though, the oncologist wasnt as optimistic about my kidneys returning to function. He had hoped to see better improvements during this visit. But, they havent shown much of anything yet. I think the KLCs have, did, and are clogging up my kidneys to such an extent that they may not come back. If I look back, they've really been impacted since May or June. But, I'm a stubborn-son-of-bitch with a grudge against dialysis and my renal doctor. I've vowed to myself that I will not be in dialysis. So, I look back on my last couple of blogs and my last doctor visits and I asked for people's prayers and positive thoughts etc for some small hope for some small positive. And, the KLC proteins showed a good decrease. Well, this time, I'm gonna ask and pray that I can get my kidney functions back. I'm not usually a person to ask for material things (I'm afraid of the ol' saying of be careful what you wish for). But, I really don't want to spend my life in dialysis. I'm grateful for the nurses and doctors that keep it going. But, it's such a spiritual drain going there 3x week for 4.5 hrs a session. I can deal with the cancer. But, cancer and kidney failure sometimes gets to be a bit much. So, we had results praying for a small miracle...maybe I can get a little bigger miracle this time. I guess it's still part of the acceptance process. I'm not looking to conceed yet. And the next step is to have a dedicated catherter installed in my right arm. It does better at cleaning out the blood and has a less chance of infection then the long-term temporary hemosplit catherter currently in my chest. I see people in dialysis with them and looks to me to deform the arm slightly and people can struggle with bleeding when the session ends. But, it's really the next progression for me that says, "you may not be getting better". And, I'm not ready for that. Overall though, it was a good week. I had a little bit more time to myself that I got use to. I continue to try to stay up beat. Back in chemo I've seen a lot a people and met a lot of good cancer patients. Personally, I don't want to be a good cancer patient. I see people set up shop in the chemo center. And, they seem to be concentrating on the fact they have cancer rather then the life still around them. Now, I may be no where where they are at. But, at this time in my treatment and in my life, I want to continue to focus on my life around me. Call it denial. Call it what you will. But, I go to my treatments and I still havent looked at one injection. I just don't give the cancer an upper hand. I choose not to recognize it and I continue on with my life. I do what I got to do but I go on with my life....if that makes any sense. It was a good weekend on the home front too. Becky and I got to make Winter Squash Soup and Apple Pie on Saturday. I had all the intentions to help out in the kitchen. But, after we got done shopping Becky still had the energy and did most of the cooking and baking. Me? Well, I had to struggle watching football, hockey and baseball while I kept my feet elevated on the couch (to keep the swelling down in my ankles...honestly! Yep, it was tough :-). I did help out though when I had to scoop the now-boiling-hot-squash from the roaster and into the soup pot. My fingers are still burned from that. I gotta give Becky credit she knew when to call in for help...the brains of the bunch. Seriously, we got done cooking and baking around 10:00pm and had some of the best soup and apple pie I've ever had! We made 12 servings of soup so it's in the freezer. Ask me what I'm having for dinner the next few months and don't be surprised if I'm having squash soup! Thanks again for everyone's help and support. You' all are great. Love ya, Lance

Team Lance Raises $1,600!! A BIG thank you to everyone who sponsored me for the Multiple Myeloma Research Fund 5k Walk/Run. We raised $1,600. You guys are great. I couldnt have done it without you. Thanks! Though, I gotta admit that I didnt walk or run in the event on Saturday. My girlfriend Becky and I got up at 6:30am to the sound of pouring rain and wind. We drove over to the event in Philly where it was cold, wet and rainy. We huddled under tents and talked to other patients. We donated the money everyone so graciously sponsored. But, it was just too miserable to do the walk (I have a couple pics I hope to post). It was good to meet some other people with the disease and I was able to find out about support groups that meet in Philly. Little by little I am being more exposed to the MM community. As far as my disease goes...This Thursday I will be meeting with my oncologist to see how my treatments have been working. I am nervous about the meeting. It seems as if I get non-positive news with every meeting. I know my kidneys are still not functioning. I know my arms, even though irradiated, still are limited in their flexibility. My blood pressure remains too high dispite being on 3 BP medications. So, hopefully we'll get some indicators that maybe...just maybe...some things have turned around a little bit (just a little....). Personally, things are fine. It's a beautiful sunny Sunday morning outside that I hope to be part of soon. I finished doing some house chores and hope to take a walk along the River before the Eagles/Dallas game (E-A-G-L-E-S...EAGLES!). I've been trying to do a little bit more with my time. Chemo has let up for the time being and radiation is done. So, I've got time that I don't know what to do with. I asked myself what is it I would want to do. So, I went out and bought an easel to learn how to paint. I've been trying to cook more. I watch way too many cooking shows and figure I can cook just as well. I try to walk when I can cause my muscles are shot (my legs and arms are skin and bones). I've been trying to smile more frequently...you know...actually saying hi to people as I pass them on my walk ...it's a novel concept, I know ;-). I just want to make the most out of my life. I've been saying the saying "Life's too short" to myself. (I often mutter it as I flip channels on TV...man there's a lotta of life wasted on TV...but I digress). For me it means to better improve my quality of life. To life live more in line of how I want to live it. I have a far way to go. I can type these really cool concepts on line and then I can be short, terse, or mean to people I love the most. It just lets the air out of the balloon when those moments arise. It's those inconsistencies that I want to work on. I try to do my best. I honestly do. I guess I can try a lil' harder sometimes, though. Take care everyone. And thanks again for everyone's support and love. Don't hesitate to say hi or call sometime. Love ya all, Lance