The Myeloma Kid

Merry Christmas, Happy Holidays, etc!! Words cannot explain how thankful I am to all the wonderful people in my life. I'm not good at receiving so much love from so many people. Friends and family have been shuttling me to and from appointments and visiting me in the hospital and doing all sorts of errands and task for me. Co-workers contribute PTO hours. Neighbors and friends have raised a collection for me. And, all the wonderful cards and good tidings. And, that doesnt include all the wonderful healthcare workers who showed care and compassion while I was in the hospital. I don't know how to thank everyone. I really don't. I will tell you though, that I promise to do the very best I can. And I wish everyone a warm and wonderful holiday. And may the love and support that you've shown me, also surround you and your loved ones during this time of the year! To Recap: I got back from the hospital on Wed night, 12/20 after spending 8 days in the hospital. The clinical term was a "right atrieal thrombosus" (...um....blood clot just doesnt sound romantic enough, huh?). The surgery went as well as expected. They did a Thoracotomy (pardon if all my medical spellings are not correct...but it get's the point across); meaning they went in through the right side of my chest rather than break open the breast bone. No bones were broken during the procedure. However, they had to spread apart my ribs and muscles, etc to get where they were going. Needless to say, after surgery, I was in pain. They gave me enough meds to drop a horse. And, yet I was awake enough to tell the kidney doc's to go "F" themselves when they wanted to install a femural catherter in my leg. (for those that dont know, a femural catherter is a temporary means of doing dialysis. Since they took out my old catherter I had no means of dialysis. But, the femural catherter means lying motionless for up to 36hrs....um...hello...I can't sit still here for 36 seconds!!). So, the compromise was to wait another day since my "toxic" numbers were still ok, and install another catherter in the left side of my chest. So, I went into surgery the next day after having open heart surgery (oh...and I was awake for this one....such fun as they tunnelled into me!). We get the procedures done and it's back to my room. Most of my nurses were incredible. Alicia was there for at least 4 days of my stay. She was knowledgable, confident, cute as a button, compassionate, caring, and also knew when to show the tough love with me. Like when they had to pull the drainage tubes from my chest....I don't wish this on my worst enemies. It felt like I was shot when they pulled them out of me. But, I will go through what I gotta go through. I'll kick and scream. Pride be damned. But, I'm here...right? Other nurses and caretakers were just as good and competent...expect for one. Denka came from Sierra Leone. And for some reason he couldnt understand why I wouldnt let him put in an IV in my arm after he blew up the Blood Pressure cuff on my arm. I mean, he literally, exploded the thing on my arm and had little idea what the numbers meant. He also proceded to tinker throughout the night with my drip tubes and almost couldnt get them back together. He scared me. And, I politely told the staff he would never set foot in my room again. The Here and Now: So, now I'm home. The pain is lessening each day and I am getting around. Mostly, the pain is at the incision areas. Though, I can feel tight across my chest. And, one of the side effects of the anestesia has left the skin on my right femur numb (I need to keep following up on that). In addition, my heart can still race and it can enter into A-Fib (I can feel it when this happens...it's too funky). I'm still restricted on how much I can do. I can't lift anything. I can't drive. I can't do anything to over exert myself. But, I am home. Oh, glorious home!! It's wonderful. I mean. I started to feel sick in the hospital. Everytime my heart raced, the nurses would come in after seeing it on their monitors and ask if I was ok. After I while I think I would make myself anxious only to see if they would come rushing in. And, then I would have my physical therapy sessions with the PT Nurse. Well, she tought me how to climb stairs again ("Put one foot in front of the other and use your hands as a guide"). Jeez, I had to get out of there just to know I was ok and alive. So, each day I feel just a little bit better. I meet with my doctor's on 12/28 to see about lifting my restrictions and to once again set a schedule for the bone marrow transplant. When I was in the hospital, the last thing I wanted to do was deal with my cancer. As time went on, I began thinking about just getting this all over with. So, I may again keep to an agressive schedule so I can sooner put all of this behind me. We'll see. In the meantime, I hope everyone has a very merry Christmas. I know in my household it will be a mixed blessing kind of holiday. I'm home and getting better. But, so much has happened that it has impacted much of our life and holidays. I unfortunately didnt even have any time to get anyone any gifts. I know they will understand. But, I really do enjoy giving as much as receiving. So, I send much Love to everyone. And thanks again for all your help and support. Merry Christmas to All. Love ya's, Lance

I'm OK...I Think: I've hijacked a hospital adminstrator's office in order to write this blog. I think every thing is ok. Hopefully, I'll get to go home in the next day or two. As it is now, my heart can go out of sinus rythym or the heart beat can be elevated (up to 150 beats/min). According to the doctor's this can be a common occurence. In other words, my heart is really pissed off that someone cut it open and it's going through spasms until it's gotten the attention it wants. In addition, I've been put on blood thinners and they want to ensure that the levels become therapuetic (basically, meaning they are saturated and are working). I'm hoping (maybe against hope) that this happens within the next day and no later than two days. It's tough to write much beyond that. I'm physically and emotionally exhausted and mentally drained. I'm sick and tired and just want a break from all of this. I will write more later about the best nurse ever and I'll fill you in on the crazy procedures and some of the crazy staff. But for now...just get me home safely. Love you all, Lance

Cancer is the Easy Part!! So...Guess what I get to do tomorrow??? I get to have heart by-pass surgery...Woofucking Hoo!! I am currently writing this in the hallway at the Univ of Penn Hospital. The people here have been great. But, I must say that I am entirely overwhelmed. The TEE scan yesterday showed an approximate 4.5 cm blood clot "hanging" from the end of my catherter (It was described to me this way, "picture a glass blowers tube with a lump of glass at the end"). The doctors are nervous for serveral reasons. The clot could become loose and go into my lungs causing a pulmonary embalesim or it could become loose and go through this lil' hole in my heart and cause me to have a stroke. So, as I type this, I am strapped to an IV with heparin to thin my blood. This was one possible plan, that the blood thinners could beak it down enough. Another plan was to irradiate the clot. But, there is concern that it could break down into smaller clots that could also do damage. So, the consensus recommendation has been fucking heart bypass surgery to remove the catherter and the clot in its entirety. Oh, and since the surgeons are there...they will stitch up the lil hole in my heart that I've had since birth...(aren't they nice). So, I wanted to let everyone know what's been going on. And, if I didnt call you back or write...well...I've been a little tied up. I'm getting so sick and tired of this all. I really, really am. I don't even have time to be fed up with cancer....I've got too much else going on. Anyway, take care and keep those positive thoughts coming. Love ya's, Lance

Two Outpatient Procedures For the Price of One! Go Figure, huh? It all started last Thursday night. I get a call from my oncologist who just received the results from an routine echocardiogram that I did earlier in the day. According to the cardiologist who reviewed the test, it appears that I may have a blood clot near my heart where my current catherter tube is located. To get a better idea of what/where etc, we need to do a Trans Esophogea Echocardiogram (TEE) which means knocking me out and sticking a monitor down my throat (oh boy!!). And, on Friday night, I get a call again from the oncologist prescribing blood thinners. So, I had originally rearranged my chemo and dialysis schedules so Friday night would be free for me to attend my company's holiday party. I was excited to meet everyone and catch up with the "going's-on" etc. But, after the news - what felt like another kick in the stomach - I just couldnt go. It's one thing to fight cancer. It's another thing to fight cancer, kindey failure, and now heart/blood issues. I guess maybe that's the only way it can be a fair fight. I mean it can't be fair for the cancer. I have all this great support and people pulling for me. So, my schedule this week turns into the TEE on Tues and the Fistula implant is still scheduled for Thursday (barring any complications). And, I still have dialysis M W F. (It's going to be an exhuasting couple of weeks). So....It took me a good day or two to get over the shock of "another" issue. I moped around the house (actually I can't even say I was "around" the house since I stayed in bed and napped on the couch). Becky came over and cheered me up by beating my butt in Parchesi and Rummikubs. (Isn't she suppose to let me win when I feel bad?) Saturday we went out and got ourselves some Christmas Trees. We got my tree up on Saturday night. Later that night (1am), I was able to put on the lights and then the ornaments. It looks good. It's a nice little reminder of the good things that can happen this time of year. Then on Sunday, I got a chance to catch up with good friends for the Eagles game. I may be negative during the games (Heck, isnt every Eagle fan?). But, to be fair...I think the Eagles are going to blow the game on every play. Anywho, hanging with my friends got me out of the house. I got to catch up with good friends who I havent seen in a while. It got me to be a part of life again. I got to see the game. And, I got to be around their kids. And to me, there's nothing like the fun and laughter of kids. It helps take away any problems that I may have. (Can you tell I don't have any children...lol). So, it looks like another week in paradise for me. Keep me in your thoughts and prayers. I think I may need'em this week. :-). Thanks again and much love, Lance

More Good News! First, I turned 41 today. Happy Birthday to ME! And then for the lesser good news (or probably good luck). On my way to chemo last week I was pulled over for running a red light. I was all hopped up on Steroids and just wanted to get chemo. To my justification, the light was yellow when I entered the intersection. And as I approached I checked to see if the intersection was stable (and that there were no Philly cops). Well, I guess 2 out of 3 was ok. But, the flashing lights started in my rear view mirror. I pull over and handed the officer all my info. He goes back to his car and I'm sure i'm getting a ticket. But, no! He say's today is my lucky day and lets me off. And, I didnt even get a chance to use the "I-was-running-late-for-chemo-sympathy-card". Just shows to go you what a clean record and clean living gets you (Although, I've been pulled over a few times in the past couple of years with my "clean" record and let go...If they didnt let me go, my record would not be clean...I'll take it!). Now for the really good news! I had another follow up appointment with my oncologist last week. My Kappa Light Chain (KLCs) proteins were down once again. They are now at 46 (initially they were 1,100). So, that's a ten-fold reduction. So, what does that mean? It means that I've been responding so well to the Velcade chemo, with little side effects, that I will not need to go through the initial "killer" bladder-catherter chemo treatment; meaning no tube up my wee-wee (probably not the right words to use if I'm trying to impress the ladies...lol). This treatment would've been needed if my response hadnt been as good. The catherter was needed because the chemo they use impacts the bladder. And ,the catherter helps keep it safe. I was so freaking out about this treatment and now it looks like I wont need it. Additionally, the whole schedule has been moved up. I begin doing prep treatments the week after Christmas. We are scheduling Stem Cell Collection during the week of 1/2 with the bone marrow transplant scheduled for 1/9/07. That's when I'll be in the hospital for at least 3 weeks. But, it's not as bad as I thought it was. It's not the boy-in-the-bubble as I first thought. There are still plenty of restrictions. But, I am allowed visitors. I can wander off the unit. And, it's set up somewhat like a hotel with my own private room, a small refridge (maybe even a small microwave), and a lobby etc. So, I'm busy up until Christmas when I somewhat get a little break and then it's the big push to begin the first of probably two bone marrow transplants. It will be good. I'm looking forward to being able to get another milestone of this whole thing out of the way. Take care and again, thanks everyone. I couldnt do it without you. Love ya, Lance