The Myeloma Kid

Blogging is Cathartic: Wow! I can't believe another week has gone by. A week that I had to do radiation, chemotherapy, dialysis and doctor's appointments...all in the same day! Looking back, it was really a roller coaster of a week. The medications (especially the steroids) can really send me up and down. But, it's another week that I've lived with cancer and another week where I've grown just a little bit more. I did not look forward to M W and F. Those (were) are the days I do the Big 3. I wish to play hooky so bad on those days. Those days are constant reminders of just where I am at. And my world of denial (which I think many of the patients choose to live in) has to fight extra hard to keep out the reality. Strange, but I sometimes feel like I am working for the hospitals and the pharmacuetical companies and the insurance agencies. It's not my life. It's as if I'm just a cog in the machinery for them to have their job and to get their money. But, on Thursday I had a chance to smile for a little bit. It was bitter sweet. But, I will take all the smiles I can get. I went out to lunch with my friends and coworkers. It was good to catch up with everyone. It was good to here about the projects and the "office dramas". It was good to see the smiles and it was good to be a part of the friendly banter. And, yes, it was good to share my story about the friendly radiation nurse...("Just keep it out of the field!"). But, it was bitter sweet. I left there and went back to the office to tie up loose ends and emails etc. It was about rush hour when I left the office. It was strangely familiar but felt so foreign. It has been almost 3 months since all this has happened. I couldnt believe where my life has gone in that time. What was so common place is now non-existent and what was unimaginable is now reality. My life is totally different. My goals and expectations are not only changing but are not even clear. Most of the times I don't even know what I can and can't do. It's a wierd feeling I've been carrying this week. Much of my foundations; wants, wishes, truths, and dreams have changed or will change. In many ways it has left me empty. But, I continue on to do the next test, the next procedure, the next treatment. For maybe my dreams may get brighter. I don't know. What I do know is that I've decided to try to live more for today rather then wait until this is all over. I mean, it's been 2 -1/2 months since all this has happened! I want to enjoy this time as much I can. I want to enjoy this time as much as I did - no more then I did, before. I just finished reading one of Lance Armstrong's biographies. He wrote about part of his battles against cancer was the need for information and how he continued to educate himself against the disease. For him, the knowledge equaled strength, hope, and willingness to beat his diagnosis. I try to do that. But, I'm so tired at the end of the day that my quest for knowledge is exhausted for my thirst for rest. But, what gets me through the day - and Thursday showed me - are the many smiles that I come across each day. The smiles that I get. The smiles that I help to create. The smiles that can be self-perpetuating. That's what keeps me going and that's what I hope to gather. Smiles = Hope. When, I'm in the chemo center and I see a nurse smile at a patient; it makes me smile. I see people walking their dogs, having lunch, playing with their children. It makes me smile. It's the little things. It continues my will to fight and to keep going. So, you've all made me smile. And hopefully I can do the same. I love you all. Keep in touch and thanks again for everyone's generous donations for the MMRF. Love ya, Lance

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

Multiple Myeloma 5k Race for Research; Sat 10/07/06 9am Phila, PA. Well....I can't run it but I can still walk! On Sat 10/07/06, the Multiple Myeloma Research Foundation (MMRF) is sponsoring a 5k run/walk. It'll start and finish at Memorial Hall at 4231 North Concourse Drive in Phila, PA.. If you want to participate, please check out the registration at www.mmrfrace.org/philly . (looks like there's others in the country, too). If you'd liked to sponsor me, you can make a check out to MMRF and mail it to me. Most of you have my email (work or home) so send me an email and I'll give you my address etc. I would need it by the date of the race 10/7. No pushy gimmicks but any sponsorships are well appreciated. (Besides that I'm pushing for the free t-shirt...lol).

Well, I've been doing chemo now for almost two weeks....I can't believe that!!??! (my apologies on the run on sentences...for some reason I havent been able use the "return" key and create paragraphs etc...I'm a blogging newbie). I hope to be able to give you more of where I'm at both physically and emotionally. Physically: In more detail, the myeloma is effecting proteins in my bone marrow. Plasma cells have formed in my marrow that generally send out proteins when there's infection, disease, etc. My cells are just shooting them off to fight some unknown, non-present infection. The protein cells that are being produced are known as Kappa Light Chains, apparently a rarer, less frequent form. The funny thing is my bone marrow biopsy only showed 5% of these (or any) plasma cells. Generally, myeloma is not diagnosed unless there's +/-30% plasma cells. So, I may have fewer cells. But, they are producing an over abundance of these proteins. So much so that my kidneys have been overwhelmed by them and have shut down because the proteins continue to block their filtering capabilities. Hence, why I am on dialysis. So, the myeloma affects (will affect) my body in three ways; Brittle bones, Infections, and Kidney Function. My kidneys have already failed. But, there's still a good chance they will recover once we get a handle on shutting down the protein production (that's what the current rounds of chemo are for). Myeloma also creates leisons on and in the bone that can weaken them and often causes them to break. As it is now, it appears I have a 6cm "hole" in my right femur and my biceps have leison growths. I wouldnt have known anything was wrong with my leg unless you told me. My arms on the other hand...well, my right arm is restricted in movements and hurts like hell. It's like a searing pain down my arm, like a pinched nerve. The "growth" is pressuring the nerves which makes my arm weaker and movements can be difficult. Next week I start radiation for 2 weeks on my arms and legs to get after these areas. This should stop the leisons and thereby lessen the pain. Then, I'll do PT to get my arms back into shape. Thankfully, I havent had any infections. That will be a concern as time goes on. My immune system becomes depressed (especially in treatment) that could put me at risk. So, I may be doing my best Michael Jackson impersonation for a while and wear the surgical mask (hoo...hoo). Emotionally: I don't even know where to start sometimes. Everything can be pretty overwhelming. I mean everyday I'm doing something to combat this damn disease. It's dialysis MWF. It's chemo Tu and F. It's radiation every day for two weeks. It's doctor's appts and everything in between. It's taken medications. It's being fu**ed up on meds. It's changing dreams and changed realities. I mean, I went from having a week off on the 4th of July to play tennis and golf, and come out of it with cancer! So, each day it's an adjustment. Each day I find my boot straps and pull them on again and do the next thing to get me to tomorrow. Some days I just want to roll over in bed. But, somehow I find the strength and courage to keep moving forward. I guess I've always been intrepid in that way. For better or for worse I can be a stubborn guy. There are some things I can't accept until I try everything. So, I will continue to keep trying. Becuase as I write this...I look outside and the sun's shining and the birds are chirping and the cicada's are whining (a lil' too much). The River is rolling by and people are walking their dogs enjoying the day in front of them. And, that's what I'm going do too. And, that's what I'm going to continue to do. Post Script: I want to thank everyone for their emails, phone calls, posts, and cards. I can't tell you what it all means to me to have you in my corner. I carry those thoughts with me and together we'll get through this soon. Love ya's Lance.

Well, many of you all know now that I've been diagnosed with Multiple Mylenoma. It's been a crazy, often absurd, strange trip, to say the least. It all began in early July with a routine blood test for chloresterol. My results concerned the doctor's and we took more tests. The fear was Kidney Disease. After much pre-diagnosis, they determined I was poisioned or a had a Necrosis. Oh Wait!! Stop the presses!! no it was Acute Kidney Failure caused by some rouge proteins. So, I end up on dialysis starting on 7/27/06. But, where did they come from?? More tests and a bone marrow biopsy showed they were (or possibly were) multiple mylenoma. I waited, probably too long. My local hemotologists seemed to know only how to deal with older, chronice patients and werent prepared for a 40yr old vibrant, pain in the ass. I followed up with Fox Chase Cancer Center and the University of Pennsylvania, both in Philadelphia and both highly reputable facilities. I ended up going with Penn and the next day (yesterday 9/1) began my first chemotherapy treatment. So, yesterday I get chemo in the morning and do my dialysis in the afternoon!! I get the double whammy!! The game plan at this point is to continue with the "low" intensive chemo therapy along with radiation for spots in my arms and maybe my right femur. Bone Therapy will be needed and what ever other preventive procedures to guard me against infection and against me breaking my bones (the mylenoma can form lesions on the bones which can make them brittle). After 2 months of treatment it will be onto more intensive chemo (the one where I get to lose what little hair I have left...except maybe it'll take care of my back hair??? lol) and as it is now, to reharvest my cells for a retransplant. But, that's another time and another place. Anyway, I feel ok. I feel as if this is just something else I must do to get through to continue with my life. Soon I'll be back and bugging the hell out of people like I have before. Or maybe, with a new lease on life I may be even more relentless then in the past...hmmm gotta think about that one :-)