The Myeloma Kid

Angels in the Office: I don't know who you are. And, I don't know how to thank you. But, you angels of the office helped me in more ways than you'll ever know. For those who don't know what I'm talking about; my company instituted a donate your PTO days (time off) program. Well...I just found out this week that people have been contributing to me. And, I'm overwhelmed that people would do that, and secondly...it comes at when I really needed it. See, I got this email from HR that states that I will now be responsible for ALL my benefits; my contributions as well as the company's. That works out to almost $400/month. Being on disability and/or Social Security would've made finding that money difficult. However, I checked my PTO statement and found that it wasnt what I thought it was. I though I would have used almost all of my PTO. But, to my surprise, there now looks like there is enough for me to cover my health care benefits until I return to work. Words can't explain how grateful I am to whomever contributed. And words can't explain how, after last week, those kind gestures helped me start to have faith again. That and a converstation with an old friend (not that she's old) who told me that I need to change my attitude. I heard it before, but everything I had to say, she just said I had to change my attitude. I wanted to kick and scream some more. But, I couldnt. So, rather then look at what I don't have, I begun seeing what I have (again). I havent let myself dwell in the land of negatives. When it comes on, I try to quickly think of my friends, family, work, mobility, and even my health. And, keeping true to my last post, I ask myself each day, "have I done something positive for me or someone today?" And the answer lately has been, yes. There is a lot that I have going for me. I can still fall into the same traps. But...the light at the end of the tunnel may not be a train coming at me. Thanks again to everyone. Your help and support really means a lot. Much Love, Lance

I've lost my Mojo: I say that in all good jest. But, in reality, this has been a tough week. I think I've been letting the cancer win. It's been building up for a while and it just kind of came spiralling down this week. I can't say I had much faith or hope at all this week. I don't know what any of that means right now. I generally pray each day and night. And I usually just ask for "God's will, not mine be done". And right now, each time I pray, it feels like a slap in the face. I guess that's been one of the hardest things so far....I was a healthly, athletic 40yr old....and now I can't even trust my body if I drink a full glass of water for fear that my legs will swell. (water...go figure). Right now, I don't know what's up or down, right or wrong, left or right. I'm so tired to do anything else but the treatments I gotta do, and yet, for me to get anything out of life means I gotta do more. I have these great ideas to do things and lately I've just ended up on the couch flipping channels (cause there aint nothing on) and then eventually I take a nap until my next treatment. The malaise has effected every area of my life. It has hurt relationships. And I've been worrying how I will continue to live in my home and pay my bills (which in reality I don't think I need to worry about yet). It really wasnt until late last week when I literally 'holed' myself up in dialysis (I used a baseball hat to cover my head and eyes and I covered myself head-to-toe in a blanket and stayed that way for the entire session) that I realized that I was letting the cancer win. Now, I at least recognize that I'm in funk and I maybe depressed. Some people I've talked to say that I havent had time to let myself grieve for everything that's been going and the things I've lost. And maybe that's what's catching up to me now. It's all the little things too. From the steriod-induced acne to the sometime swelling of my legs, to the renal diet, to the catherter tubes in my chest. And, it's what's on the horizon; a fistula in my arm on 12/14, to the heavy chemo at the beginning of the year followed by the bone marrow transplant operations. I've let myself get away from day-at-a-time mindset. The Road To Recovery. Step 1 has been to talk to people more and let them know what's going on. I will try to limit my grunts of being "fine" and "ok". Step 2, no matter how tired I may think I am, I will do something positive for myself each day. No matter how little the accomplishment, I will do something good. Step 3: I will try to do something good for someone else each day. It could be a "hello" or even just holding open a door. But, I need to do more if I expect to get more out of life. And Step 4: I will try to find that faith in god and life again. I'm not sure where that will come from. And hopefully I'll find it sooner rather than later. Because it can feel so empty sometimes. Anyway...so sorry to be a bummer on this blog. But, I think being honest is the best thing for me (and maybe for others who may go through tough times). I'll get through this...others have and so will I. Love ya all, Lance

My Attitude: I was told on several occassions this week that I have a good attitude and a positive outlook on this disease and everything I'm going through....If you say so. Quite frankly, I'm not sure what my outlook, beliefs or feelings are, and what constituents a positive attitude. All I know is that I try to choose to focus on where I am at. Today is Sunday 11/12/06. The Eagles won. I am relatively healthly today. I can pay my bills. I have lots of good friends and support. I have a roof over my head. I can still get around by myself. There are a lot of positives. I look around in life, or when I'm in dialysis, or when I'm in chemo, and some people may not be as fortunate. Yes, things can suck. And do I wish everything was different?....almost always. But, there's not much I can do about it now can I, other than keep doing what I gotta do each day. Medically speaking; Everything continues to progress towards the bone marrow transplant at the beginning of the year. A good thing is, provided I stay healthy, my schedule is going to lighten up a little between now and the holidays. I will be winding down my Velcade chemo treatments and vacation/holiday schedules at the Hospital will also afford me some much needed down time. I'm sure they'll find other tests for me (e.g. ekgs, etc) as I get ready for the transplants. But, I can a little bit more of a breather coming up. Which is good...I can get to the painting I've been planning to do. As you may know, I've been trying to paint some more. My inspiration was going to be my bedroom. I needed new paintings on my walls and wanted to change things around a bit. So, I went and got a comfortor, sheets, and soon to get curtains....all of this mind you just to paint....I've gone from a palate of blues and grays to burgundy. It's kind of got this "pimp daddy" feel to it now (Yeah Baby!). I figured I wanted something different and some color. Now, I've just gotta paint like I started to do. All in all, things are fine. I will be addressing some billing issues. The one thing about being sick is every bit of mail, each pre-certification phone call, each bit of insurance information makes you feel for your financial life. Every call and correspondence deals with having the procedure covered or whether or not a bill was or can be paid. That's added stress I or anyone else really doesnt need. Take care to everyone. And thanks again for all the help and support. It really means a lot. Love yas, Lance

Progress: My kappa-light chain (KLC) proteins continue to decrease...Woohoo! The numbers dropped from 1100 when I was first admitted, to 260 a couple of weeks ago, and are now at 89. I'm now only one order of magnitude higher than where they should be (between 1 - 2). That's the good news. And, there is really no bad news. Just status quo, though, my kidneys aren't playing nice. So, I have an appt 11/15 to see about getting the fistula implanted in my arm for better dialysis treatments. So, we'll see. As I said in the opening...progress...as we are progressing into the next stages of treatments. I will begin getting tests to ensure that I will be able to undergo the bone marrow transplant procedures. I need to get the basic pulmonary and ekgs, etc set up. As it looks now, I will continue my velcade chemo treatment up until Christmas time. Then after the first of the year, I will start on some of the "chronic" chemo in preparation for removal of stem cells from my bone marrow where they'll culture and re-grow healthy marrow. I'll get another dose of the "chronic" and shortly after, they will re-inject my own cultured marrow back into me. This is the time when I'll probably most vulnerable to infections because I will basically have no immune system until my marrow can take hold again. So I'll get to play the boy-in-the-bubble (It was the mopes!) for about 3wks at the University at Penn Hospital. And, if that wasnt good enough...I'll get to do all over again 3 months later (April-ish)....Woohoo, again! Besides, that I feel fine. I feel lucky at times having been able to accomplish and do the things I still do. I've been fortunate to the point where I now refer to this as being the "Easy" part as compared with what I see coming down the road. I mean, I'm able to take care of myself, my home, and still get out and about. In fact, Becky and I went to NYC this weekend and had great time (though, the subways were screwy...they should do something about that...wait...I was doing something about that...lol). We went to Amercian Natural History Museum, did the Top of the Rock, and Times Square. It was fun. But, lots of walking...urban hiking, as I tried to convince her. So, I'm fortunate to have these moments. It's funny, if you didnt know me, you wouldny have a clue what's been going on. And, I like those moments when I can just "B". I don't think about the procedures. I forget about the pains in my arms. I forget about the swelling in my feet. I forget about the upcoming procedures and tests, etc. Ah...the weekends. I too get some time off. Take care. Drop me a note or call and say hi sometime. Thanks again for everyone's help and support. I couldnt do this without you. Love ya, Lance

Happy Halloween! Ok...so I'm a day late (and a dollar short). It's the thought that counts, right? All is well here on the homefront. It's been a week of status quo for the most part. I finished up my third round of Velcade chemotherapy and I continue to go to dialysis. Starting on Friday (11/3) I will be getting a bone stiffner (insert joke here) added to my chemotherapy. Its called Iridia and it's aimed at keeping my bones from getting too brittle. It's added via iv drip over a two hour period. So, my chemo will go from a couple of minutes to a couple of hours. I have some doctor appointments coming up that will tell me how successful the chemo has been doing; how well the radiation worked; what's the next steps in treating the myeloma; and will or wont my kidneys return to function. I could give you my opinions on the above....but I'll wait until the professionals have their say...who knows, right? Like I said, for the most part all is well. I did just fill out my long term disability paperwork part of which they ask me to file for social security benefits. This is again a strange concept for me. I may be back to work at the end of January and then again there is a possibility I may never work again. Who knows? I entered all of this back in July thinking I'll be back to work at the end of the week. Then it was at the end of the month. Then it was 3 months. Now it's 6 months, maybe longer. It's not like I have something that can just be removed or treated directly. It's like I have this moving bulls eye. And we need to keep looking at the numbers to see if we've hit. It can be frustrating. I feel fine for the most part. But, then I've gotta do all my treatments. So, I'm learning how to have patience and how to feel worthy even when sometimes don't feel like I have very much worth. Like many people, I can tie my worth into my job and career. And while I'm not working I sometimes feel as if I'm not doing enough. I feel like I should be doing more. I have a list of things to do. But, I either 'cant' find the time or I get too tired to do it. I'll get around to doing those things. One thing at a time I guess. Take care and thanks for everything. Love ya all, Lance