The Myeloma Kid

The Cost of Being Sick!: The following is said with my tongue in cheek. For I'm incredibly grateful that my company has kept me insured for all of this time. Lord knows that I can't even begin to imagine what all this has cost; actually a rough estimate puts it close to $2M. So, I guess if I wasnt insured then the hospitals and treatments and doctors would be outta luck. I'd be living in a cardboard box and no one would be getting any money.

But, i digress....The cost of being sick. Well, I've lost over 50lbs in the past year. For the past few months I've been cinching up my belts smaller and smaller and overlapping my pants and wearing shirts that are now way too big. I've estimated it's at least 5 or 6 inches off my waist. The new diet plan...The Cancer Diet!! You too can lose weight quickly and not so easily!! So, my cheap ass finally said I need new clothes after my shorts repeatly fell from my waist to the floor. So, I went out and got 3 pairs of shorts, 3 belts, and about 4 shirts. That'll be the start. All my work clothes will need to be altered, too.

And that's just my clothes. I'm now getting antsy to start excersising again and get into shape. I've been inactive for the past year due to my treatments and chemo etc. But, I can't run anymore for fear of impacting my bones. So, my idea is to get a bike. You know, low impact but still a good cardio workout. Well, let me tell you that my butt is so sore! I've been trying out bikes and I guess my ass isn't use to those thin, hard bike seats. And, now I'm trying to leverage out in my brain the cost of riding versus how much dust will gather on the bike. In my head I'm riding the Tour de France. But, somehow I know it'll spend a lot of time in the corner of the room. So, we'll see. I'm not ready to ride yet. I'm waiting to get my catherter out which will probably occur within another month.

And that doesnt include the new TV that I needed when mine exploded. I figured I needed a nice one if I was gonna be laid up after chemo and all my treatments. Rationalizations work well, huh? Thank god I've been able to hold onto my saving through this...so far.

Ok the medical progress....I went to the Doctor's this past Thursday. We don't have numerical data back yet telling how effective the chemo and bone marrow transplant did. But, the doctor was real happy with my progress. My first week back was rough. But, since then I've been feeling better and better. I've actually been out golfing twice now since the treatment and apparently that's impressive so soon after chemo (I actually walked 11 holes yesterday). So, I guess I can recuperate pretty good. I'm guess that's from all of your positive thoughts and prayers. I probably wouldnt be here without you.

So now I'm looking forward to getting back into life. I'ts been a year since I found out...well actually July 9th will be a year. Hopefully everything will show I can begin some semblance of a life. I will still be on dialysis. That sucks. That takes up 3 days a week. It might mean I need to give even more effort. But, I'm hoping that I can fit a life and work in and around that. We'll see. I'm getting anxious to be productive again.

Take care and thanks again to everyone. I hope all is well with you. Love ya, Lance

I've Been Home a Week and Finally Starting to Feel Good: Man! I got home last Saturday 6/9 and I'm only now starting to feel any type of good. I wasnt sleeping. My stomach hurt. I was irratible, miserable, and depressed. Only a couple of days ago have I been able to sleep and eat anything of substance. I only now realized how much of a "Hospital Hangover" I had. It's funny. They released me and since I was no longer in the hospital I figured in my head ( a dangerous place to go alone) that I was ok now; forgetting that I had only had chemo a couple of days prior and they had me hopped up on dilaudid for 15 of my 18 days in the hospital. So, I'm still recovering from chemo and I'm also withdrawaling from the pain meds, too. Then top that off with cold, dark cloudy days earlier this week....well I didnt want to get off the couch. I was licking my wounds so to speak. I didnt feel like doing anything. I only checked my email 2 days ago for the first time. And, I've been out of week and I'm only now typing my blog. I lost interest into doing anything. Oh, and the kicker to it all....My Father went into the hospital the day I came home. My cat, which they keep at there house, bit him on the hand a couple of days prior. Well, he didnt clean it or anything and it got infected. His hand swelled up like a balloon. He finally went into the hospital last Sunday. He's lucky. He could've lost his hand. But, the doctor's got all the infection out via some quick surgeries. So, I'm just out of the hospital and I'm trying to help my Mom out to and from the hospital and around the house. But, I can't. I'm just too darn exhausted. All I want to do is lay on the couch. Each day feels like I've ran a marathon. Every muscle ached. That's how fatigued I was. Thank god for my brother and his family. They really helped take care of my Mom and Dad (and still are). They talked with and met with the doctors. They grocery shopped and did my parents laundry. They really helped out and let me rest in the process. My Father is home now. My parents are taking it easy. Something both my brother and I keep reminding them to do. My Father will be on antibiotics for a month needing to take them 4x a day. My parents are doing much better together needing to work together a little bit more than they are used to. And me? Well, life is going on. I've gotten a couple of good nights rest. I've gotten outside. I'm slowly letting my body recover. And in the process I again realize just how much effort is needed right now. If I want anything I need to make the effort to get it. Yes, I needed to rest. But, I also needed to get myself off the couch. I again began to "poor me" and looking for something else to get me out of where I was. In the end, it's me who's gotta get me out and going. So much effort sometimes to even do the littlest things. But, I equate it to that old Nike commercial. "A body at rest will stay in rest. I body in motion will remain in motion". Sometimes I need to keep reminding myself. Anyway, I visit the doctor's this week to find out where my numbers are out and how successful the transplant was. Though, actual numbers and data will still be a week away (I get bloodwork this Thurs). I'm feeling better and hoping everything went well. Overall, the 18 days I spent in the hospital weren't the worst days. The care of the staff and probaby being hopped up on pain meds made my stay that much more bearable. LOL. Anyway, take care and thanks again to all who've given sooooo much. It means a lot. Love ya all, Lance.

The Chest Tube is Out....Hooray!!: I can be the biggest baby on this here planet Earth. I can kick, scream, whine and generally freak out over the smalest thing or have melt downs over much larger issues. I needed a chest tube installed once they found the collapsed lung. It would inflate the collapsed area of the lung. As it turned out, it wasnt that big of a tube. And I whined and screamed enough to get some anti-anxiety meds and pain meds to take the edge off. Well, the doctor came in yesterday (Thurs), and with a little kicking and screaming, he removed the tube and quickly patched it. It turns out the tube inside my chest wasnt as large as the tube that extended outside to the collection chamber. So, my thoughts were bigger than reality. It still hurt, but not as bad as back in December during the heart surgery. That event and pain will be permenantly etched in my mind. Additionally today (Friday), my central line that was installed in my neck to be used for the stem cell transplants, transfusions, general iv infusions, and blood collection was also removed. I again kicked and screamed and this time it was for even less pain than before. I didnt even know it was removed. I kept waiting for it to be removed and it was already removed. lol So, now its Friday night. My tubes are out. I have a new iv in but, I'm not connected to any poles or iv lines. My blood counts have risen high enough that I'm no longer neutropenic. So, I'm only a transfusion of red cells (B+...like my atitude...get it..."B Positive"??!) and platlets left to be completed Saturday and I'm outta here! I can't believe it will be almost 20 days that I've spent in the hospital. Most of my time here has been well spent. I didnt freak out all that much. For the most part, I was able to pass the time away without many times of anxiety or outright boredom. I thank the many friends and family visits, the cards and gifts, which kept me going. I thank the absolutely incredible nursing staff here on the Rhoads 7th Floor. They all were incredible. I've never been around a more caring staff. Everyone of them treated me with respect and care every person deserves. They really helped my stay here to be manageable. So thanks to everyone. I love you all. I couldnt have made it through this without you all. And now...A new life will begin. Love you all and thanks, Lance

I've lost my faith in Doctors, Hospitals, People, and God; Today was fucking great. Everything is going according to plan. My 'counts' continue to lower. I'm getting sporadic low-grade fevers. All the things that are suppose to happen. And in reality I feel really good with everything going on. "So, Lance, why the loss of faith?" "Why the fucking sarcasm?" Well...I go get a routine chest xray to look for possible infections. They do the xray, run blood cultures, and are giving me antibiotics to prevent/limit infections. So, I get back from the xray and my nurse tells me they found something on the xray. I immediately think cancer. And, she hems and haws to the point that I'm convinced my lungs are filled with liesons. The Doctor comes into the room and he's not much better but it's not cancer. IT is a COLLAPSED LUNG courtesy of the Univ of Pennsylania's Internal Radiation Department. They are the ones that punctured my lung when they installed the new catherter on 5/24 to be used for the stem cell transplant, blood work and iv's. So, I'm told that I need to immediately go on oxygen and get a surgery (tonight!!) to install a chest tube so they can inflate my right lung. I'm not happy. During the conversation with the Doctor, he tells me that a common phrase in the IR Dept is, "If you havent collapsed a lung then you havent done enough catherter surgeries." On this statement I dismiss the nurses and doctor's before I start throwing things. Time ticks by and I slowly cool off (time and me hitting my pain med buttons). The nurse comes back in and apparently they've reconsidered their approach and that I don't need the chest tube ("at least for now",...that's the statement I filled in). See, my fears about surgery is that my counts are at their all time low. Surgery increases the chances of infection. I'm a walking plague of complications. So, their surgery would probably kill me. This is what they thought too. In addition, the catherter was installed on May 24th. So, I've been walking around with this problem for +/-10days. And, I havent felt bad from it. One wonders how the doctor's and nurses who listen to my lungs 3x a day didnt find the problem. So, because of those factors they will let me use oxygen in hopes it redevelops the lung. (again, my input..."then surgery"). I'm so sick and tired of complications and outright mistakes. My prayers have been simple; "Keep me healthy, safe and no complications". Seriously...that's my daily prayer. That's all I've asked god for during this. And he/she/it can't even keep this end of the bargain. Then as a topper, Becky and I started a puzzle in the family center last night. We had all the edges done and more. We had all the pieces separated into piles according to color (my anal-retentive idea...it would make it faster to put the puzzle together). We even put on a board so it could be moved from the table and when we left, we put a note on it "for people to enjoy or if it need to be moved to please see Room 7006." After, the news of the collapsed lung, we just want to be distracted by doing the puzzle. But, we can't. Someone, or someone has let someone, destroy the puzzle. They took apart the puzzle, they mixed all the separated pieces back together and on the floor, and then conveniently replaced our note back on top of the pile of puzzle pieces. I can assume who and what happened. But, that might not be fair. Regardless, it seems that too many people no longer know what the meaning of respect is all about. People either tore apart the puzzle or let their children tear it apart. Maybe we were naive and wrong to leave the puzzle out. Maybe I was the one taking up space in the family center (though it seems empty enough on most days). Maybe I'm being too tough. But, I would think, as person, or as a parent, you are taught to mind what's yours. Or if not, at least notify Room 7006 of the incident. So, now I get to go back to my Room 7006, not build my puzzle, wear an oxygen mask and wonder where I should now place my faith. My doctor's have left me down. It feels like my god has let me down. And now people and their lack of respect have stolen what little bit of relaxation I had in this place. Take care and I'll keep you posted. Lance