The Myeloma Kid

My Counts are near their Lowest...and I feel fine; (A somewhat reference to REM). I'm at Day 6 since the stem cell replacements and all counts are continuing to drop; white cells, platelets, and hemoglobin are all scarily low and stable. Yet, I havent had a fever or any infections....thank god. The bright-outlooking Dr Steven Goldstein thinks I'll get fevers soon and start feeling bad etc. He also doesnt have much time for my input. So far, he's one of the people that deserves to be pompous since he is a Doctor and can play God with me. Rightly so, I guess. My input means nothing and all the things that we've worked towards in the past is just that..history. Anyway, he just left and I wasnt too fond of my meeting with him. So, where was I, ok...soon I should start to see my numbers returning upwards, probably by the weekend. So far, everything has been fanatastically uneventful. The doctor's have been happy with my progress. My biggest issue again has been the abdominal pain which has decided to show up again. It really puts me in a damper when the pain jumps on me. The doctor's say it can be exaggarated by the recent chemo and stem cell replacement. I'll give them that. But, the pain is just all too familiar. Thank god for the care nurses and doctors here (Except for Dr Steven Goldstein). Most are willing to help any way they can and they do listen. I'm only a call-button away from some type of medication that will take away the nausea or the pain. It's funny, I just got this attitude...if its not chemo related than why are we treating it, or there's not much they can do. Isnt this a hospital??!! Oh yeah, it's a teaching hospital and I'm a cancer patient. I can't wait til my numbers increase and I get outta here. It's getting frustrating. Talk to you all soon. Thanks for all the well wishes, visits, prayers, cards, notes and phone calls. They really mean a lot. Love you all, Lance

Wow...It's the Weekend Already: Here I sit in the family visitors center typing away. It's Saturday evening and it looks like there's a storm a brewing outside. The nurses who've come into my room say that it's getting really warm out. It sounds like it's making for a perfect Memorial Day Holiday Weekend. My Holiday???!! It's being spent laying in my hospital bed with the occassional wandering of the halls. Though, that's not a self-pitying statement. It just is. I've had the mindset that this is what I need to do. And, I can't believe I am doing it....really! I've completed the Malphalan chemotherapy. They've put in yet another small-bore catherter in my chest (they used it for the stem cell transplants and it eliminates IVs and bloodwork needles....which I figured wouldve been over 84 over the course of the 3 weeks). And, they've already done the stem cell replacement. It was surprisingly anti-climatic. They took my collected cells which were kept in thin plastic bags. They almost looked like Steak-Ums as they removed them from the portable freezer. The resident used a large syringe and just pushed the stem cells into my catherter and into me. 8 bags worth. It took less than a half-hour. No biggie. No pain. The biggest thing is a bad after taste which they medicinally issue Starburst to counteract the flavor. I couldnt taste anything but Blue Rassberry! So, now all I do is wait. And all they will do is m0nitor me. The side effects of the chemo havent kicked in yet. I'm not yet neutropenic, meaning I won't have an immune system. So, those effects should be hitting me shortly. They really want to ensure that I don't get any fevers or infections. Mouth sores can be an issue but they gave me a saline rinse that I continually use to protect against them from showing up. I don't want mouth sores. Anyway...so far...I've been in good spirits. The procedures have gone well and I've felt relatively good. I've got lotsa books from friends and the library here. I'm actually going to read Farehnheit 451 again. I read it in High School and want to read it again. The faily center has lotsa videos, too; good ones. They hopefully will make a nice diversion. I've got my i-pod loaded with classic jazz; Coletrane, Bird, Miles, Monk, Armstrong, etc. I lie in bed at night and just let the music take me away. They are amazing. I've had many great friends and family stop by, call me or reach out and say hello. It really does makes it easier. Week one is down...Two more to go. I hope all is well with everyone and everyone is out enjoying this wonderful weekend. Take care and hope to speak to you all soon. Love ya, Lance

Well....Here We Go!: Well, Starting Monday night or Tuesday morning, I will be starting the chemotherapy and stem cell replacement treatments that will have me in the hospital for approx 3 weeks. Yippee!! (he said sarcastically). I will need to do dialysis at my local treatment center and then go to the hospital Monday night or Tuesday morning (I'm of course pushing for Tues since they won't do anything on Monday anyway. Any night away from the hospital is a good night). The schedule will be chemo on Tuesday for 1 hour. It's melphalan and the dose will be 100mg. That's down from the usually 200mg which the doctor said he was lowering to limit the effects due to my kidneys and wanted to keep me alive (I, of which, thanked him for this concern). It's amazing. One hour of dosage will effect me for about 1 entire month. The doctor doesnt expect me to get the "full-on" effects since the dosage is reduced. But, 1) it's me, and 2) it's chemo. You do the math. So, I'm expecting horrible nauseau, further loss of hair (and it was just growing back), fatigue, and possibly the worst of all the mouth sores (I hope not). I'll still do my regular scheduled dialysis M W and F (I'm guessing it will be in room after Wed). And on Thursday my stem cells, which we harvested earlier, will be re-injected. Then, it's watch and wait for at least 2 weeks to see that all goes well. I'm so not looking forward to this. But, at the same time I want it over. The Doctor (Dan Vogl), is positive about everything. My cancer levels again were down from my previous tests. So, they can continue to drop and be encouraging. It's hoped that the Melphalan will send the cancer even further down into the deepest and darkest recesses. As much as I'm afraid of the next coming weeks, I'm also anxious over what happens next. How well will I be? Will dialysis still be in my life? Will I regain at least some of my active life style? How will my life be? How much and what type of work will there be? Will I be able to afford my car, my home, my life? Will insurance still be available? Yikes!! I've let all of this "future" stuff creep into my brain and it's begun to fester. It hasn't made for a positive pass week or so. And, then couple that with the fact that I had to do my wills....yes...a couple of dark moments. All that being said, I don't know what's going to happen. The treatment is straight-forward but has it's risks. And, not having fully functioning kidneys increases thoses risks. So, I am concerned. But, what will be will be. I will do my best to keep on doing my best. That's all I can do. Though, Sometimes I must admit that I think it would be just easier if it was all over. I'm in pain now. The phantom pain is now "only" frequent severe abdominal pain and cramps. The fu**ed-up fistula and the new fistula (that apparently is maturing well) has caused numbness in my right arm. I've lost about 40lbs. My right leg is still numb from the heart surgery and my arms can still have neurapathy from the initial onset of the myeloma. And the pain and discomfort will probably only continue over time in one form or another. That's what myeloma does. And, I get afraid of what the "end" will be like given what I've heard. But, again....all that said, there's something not-so deep inside of me that wants me to keep moving forward. I want to keep on living to see what this life has to offer. I still think life is wonderful and that there's something around the corner for me if I don't give up. I'm a fool I guess in that way. But, sometimes it's better to be naive' then jaded. It keeps things fresh and it still allows life to be magical and full of surprises. So, I will continue to hold out for the magic. Ok, now for some practical info....Please call if you want while I'm in the hospital. I will return all calls if I am capable. Please email me or post on the blog. I will try to respond, but I think my electronic capabilities will be limited. All snail-mail will be forwarded to me. Please come and visit if you'd like. I will be at the Univ of Pennsylvania Hospital at 3400 Spruce St in Phila, Pa, 19104; probably on the 7th Floor of the Rhoads Building. Visiting hours are flexible to meet the patient's (moi's) needs. I don't think I'll be quarantined. If anything, visitors and myself will need to wear surgical masks (it may be an improvement for some of us..;-) and sit on either side of the room for a while. No fresh flowers. People are asked to refrain from bringing younger children (especially if they havent had chicken pox); not to come if they are sick; and adults who have been exposed to chicken pox within the past 25 days shouldnt come either. Other than that, it's pretty straight-forward. It's gonna be a rough 3 weeks. But, after that, hopefully I can get some assemblance of a life back. I hope to see and/or hear from you all shortly. Take care and much love, Lance

Post Script to My Last Entry: I measure 6'4" and weigh 215lbs. I'm a 41 yr old heterosexual male who lives in a townhome. I dont have a yard. But...If I had a yard or if I get a single-family home I would want lots of flowering trees, bushes, and flowers. I look around this spring and I see all these incredible trees and bushes; Dogwoods, Cherry Blossoms, Magnolias, and other trees I cant name. Azeleas, Rhodadenrens, Forsythia and other bushes. I want ground cover....lots of ground cover. Phlox, I think. Purple, pinks and whites. I want daffodils and tulips in all colors. Give me dark reds and deep purples and brilliant yellows. I want color, lots of color. I drive down the streets in awe. I almost run off the road looking at peoples yards or trying to peer behind there homes for that burst of color I havent seen before (there's this deep purple flowering tree with tight small buds and I think it will have dark red leaves). These trees, bushes, and flowers put a smile on my face. Sometimes they leave me breathless. It can be the small things in life sometimes that are the most special.

I guess my miracles were actually bad luck: I was told by a good friend the other day that I was one of the most optimistic persons she knew. I was puzzled over this for a while since I've always had a split personality when it came to the glass half filled/empty scenario. But, I've held onto this belief that my kidneys would return to function. Two pieces of evidence in this were my heart surgery in December (which was the day my fistula was initially scheduled) and the botched fistula surgery in March. These were my miracles. I figured that something good was going to come out of these botched plans. That there was a reason that the fistulas didnt work. That they were signs that my kidneys would return to function. Well...maybe there's still time. And maybe there's another botched surgery on the horizon (please no). But, Tuesday night I go in for a Wednesday morning procedure at U of P to do yet another fistula surgery. This time they are going to take a vein in my upper right bicep and connect it to the artery in upper right bicep. This will allow the vein to enlarge and strengthen to the size and strength of the artery it's connected to. For those into transportation, it's kind of like making a highway bypass allowing for increased traffic flow. Then, during dialysis they can insert needles into the vein so I dont need the catherter anymore. There's still much trepidation given my fistula history. It's, for the most part, a routine operation. But, each time it's been scheduled I've had another thing go wrong. So, what's next, right??!!! I hope not. As much as I don't want this, I just want it to get over and done with. And, that's the way I feel about bone marrow transplant, too. I don't want any part of it. Yet, I want to get this part of my life over with. I caught myself waiting until tomorrow to do things. I had a conversation with my doctor who said it will be rare when there comes a day when I won't be battling this stupid disease. I was at first very down about it. And still can be. But, what it did was shake me up to not put things off. To live more for today and not wait until tomorrow. I have begun to live my life again and not waiting for it to restart. It's more of a mindset then anything. I'm not climbing mountains. But, I did play golf on Thursday and I registered for a sailing class (I've never sailed but always wanted to). So, I guess it's baby steps. Best of luck to everyone. I hope everyone can enjoy the spring. Love ya's, Lance

A Quick Update: I just wanted to let people know where things stand. As you may or may not know the bone marrow transplant was/is postponed. They want me to again get the fistula graft completed prior to the transplant. So, I'm currently scheduled at U of P to get the fistula completed on Wed 5/9/07. It supposedly will help with dialysis and takes 2 to 3 months to mature prior to its use. So, it makes sense to do it prior to my stem cell transplant which would have me out of action for a while. Speaking of the transplant, if all goes well, I can be in as early as 5/21/07. Again, I will be in the hospital for at least 3 wks. I will be able to have visitors which I encourage. There will be restrictions since I'll be dosed on heavy chemo and my immune system will be virtually non-existent. But, I think just having people show up, even for 5 mins, even if I only know you're there, will greatly help me out during this time. I'll post all available info and directions etc as the date gets closer. I again want to take this time to thank everyone who has sent me emails, cards, texts, phone calls, and even a hand written letter. You don't know how much they lift my spirits. I appreciate you letting me in on your lives in these correspondences. It's good to know that I'm cared for and it's good for me to continue to keep in touch with people outside of this illness. It's easy to become isolated in the pain and sickness and forget there's a life beyond what's going on. I truly appreciate everyones efforts, help and support. I hope everyone is enjoying this (now) nice spring weather. I hope to get out tomorrow (Thurs). Enjoy and love you all, Lance