Tuesday, February 2, 2010
Sunday, January 31, 2010
Hey. It’s me again. You know the guy with one testicle who sleeps a lot and is in the process of “battling cancer”. Let me first thank everyone for coming to the benefit at Burt’s. It was a huge success. I myself was unable to attend (doctor’s orders,) but saw pictures and was thrilled to see that Mini-Milo went in my place and partied his little ass off.
It’s been an interesting week. Met some great people, slept a lot, had a twenty minute phone conversation that I cannot remember, attempted to swim some laps at a local pool; was winded after lap one and saw someone almost drown. I was visited by my brother who lives in Los Angeles, and also completed my seventh week of chemotherapy; five more to go (knock on wood).
So, Monday night I receive a phone call from my friend Stacey asking if she could come to the hospital to visit and take some pictures. “People love pictures,” she says. “It’ll be good to post them on your website”. Good for whom? I don’t like pictures. Especially if the pictures are of me, and doubly so if they’re of me with cancer, being pumped full of chemicals; chemicals, I might add, my body has a hard time absorbing and tends to store in my face, neck and chest. It was cute when my childhood hamster would store things in his cheeks, my sister and I would grab him by the face and attempt to squeeze out whatever he was hording (sorry PETA,) but when I store things in this manner, it’s creepy. I agree to the pictures but only if they are done in the style of the glamour shot: a feathered wig, make-up that accentuates the chubbiness of my face, a leisure suit and a faded backdrop; she only hears the “okay”.
Tuesday morning Stacey shows up (without her glamour shot equipment. I try to hide my disappointment,) and I can see the uneasiness in her eyes. I think the severity of what I’m going through just hit her. She smiles and tries to stay upbeat, but I can see what she’s really thinking: “Holy S@#t!” I introduce her to my nurse and my infusion equipment. She still seems distracted. I want to put her at ease, but can’t seem to think of a way to do so. Its day two of week seven and the fatigue has set in. I want to make her laugh, but don’t have the energy. A man walks past towing his infusion apparatus towards the bathroom, looks over at me and nods. “Who’s that?” Stacey asks. “That’s the dentist,” I reply. “The dentist?” she asks in disbelief (He’s a few years older than me, but looks ten years my senior, wears stained jeans, a matching tee-shirt and is missing a good deal of teeth). “Yeah,” I say, “That’s the nickname I gave him after I overheard him tell a nurse that he pulls his own teeth.” “Eee,” she says widening her eyes and curling her lip.
Stacey is here not only to take pictures, but also to introduce me to Liz who’s daughter London (a.k.a LuLu,) has been fighting Alpha 1 Antirypsin Deficiency since birth, it’s a genetic disease that causes liver disease. I am happy to announce that LuLu received a new liver on January 15th and is doing well. Liz has offered to donate some of her time and resources to help raise funds for my treatment. She has become well versed in the art of fundraising during the past year (read more about LuLu at: http://liverforlulu.blogspot.com/ or click on the link at the top of this page).
Stacey leaves the room to call Liz and I call my nurse over. I had had lab work done the previous day and wanted to see the results. She hands me a piece of paper and directs me to the numbers I’m looking for: White blood cell count looks good, Red blood cell count looks good, she rambles off a few more numbers that I pretend to understand and then gets to the part I’m not sure I want to hear; tumor markers. Tumor markers are used to determine the amount of cancer in the blood or something along those lines. A typical range is 105-333. When I was diagnosed my levels were at 611. Post surgery they dropped to 533. And now, six weeks into chemotherapy, they have climbed to 664. “What does this mean?” I ask the nurse. “I’m really not sure,” she says. “When is your next appointment with your doctor?” “Not for another week.” “Well,” she says, “I wouldn’t worry about it until you talk to your doctor. It could mean nothing.” I feel defeated. Have I been going through all of this for nothing? Is my body not responding to the chemotherapy? And if so is there another course of action I can pursue? These questions would have to wait until next week. My doctor is out of town. I decide not to jump to conclusions and to wait for the facts; easier said than done. I pop some anti-anxiety medication and regret asking for my lab results. The dentist passes on his way back to his recliner. I laugh at the thought of him pulling out his own teeth in the mirror.
Stacey returns with Liz and I try to stay in the moment. Liz introduces herself and sits down. Her demeanor is very calming and I am glad she walked in when she did. We discuss this and that. We are both fans of Arrested Development and Curb Your Enthusiasm. I wish I could remember more of our first meeting, but all I could think about were the lab results. I apologize Liz. Stacey and Liz take some pictures of me, take some pictures of us together and Stacey says her goodbyes and heads back to work. Liz and I talk a little while longer and then she too leaves. I put on some music and drift off into sleep.
I hear a loud snort and jump back into consciousness, realizing it came from me. Everyone is staring at me. I can’t help but laugh and then apologize to the woman closest to me. “Feeling fatigued today?” she asks. “Oh yeah,” I reply. “Nothing like a little exercise to battle fatigue,” she says. I don’t like the tone of her voice. It makes me feel like I’m her lazy thirty-year-old son who lies around all day watching Matlock reruns, eating potato chips and coming up with excuses for why I do not yet have a job. “I’ll look for a job tomorrow,” I picture myself yelling and then realize that we are still in the middle of a conversation. “Yeah, I know. I plan on swimming some laps after today’s poison-pumping session. Care to join me?” I ask. “Oh heavens no,” she says, “When I said exercise I meant a walk”. I suddenly realize she’s not the one being rude, I am. I get up to use the bathroom and return with a peace offering of peanut butter crackers for the woman. She gladly accepts and I feel better. I return to my iPod before I assault another innocent bystander with my horrible mood. I can’t seem to stop thinking about my lab results.
I finish my infusion for the day, say goodbye to the woman next to me, wave to the nurses and notice the strange nod the dentist gives me. It’s as though he has witnessed me commit a crime and wants me to know that he knows. Did I commit a crime while I had been sleeping and the dentist was the only one around? I hope not. I would hate for him to blackmail me into pulling some of his teeth. I give him a raised eyebrow and leave for the day.
I head down to the local pool, shower, change and ease myself into the water. The water feels good. I push off of the wall and start out a little too strong. When I reach the other side it takes me several minutes to catch my breath. I repeat this process for what seems to be an eternity; ten minutes. Ten more, I tell myself and push off the wall. Five more minutes pass and I’m finally beginning to find my rhythm. While coming up to breath I hear a loud whistle followed by a splash. I come up and realize that the lady two lanes down from me is being rescued by the lifeguard. He pulls her out of the water and she seems to be okay. I decide to skip the last five minutes of my workout. “I could be next,” I think to myself.
That night I invite my brother, his girlfriend and their friend Danielle over for dinner. They have come to Salt Lake in search of work and housing. No, they are not homeless, just looking to get out of Los Angeles. We are celebrating them finding a house to rent. It’s a beautiful little house with new hardwood floors, vaulted ceilings and skylights, four blocks from my house. They’ve been in the house for only a few hours and have already borrowed toilet paper from me. I look forward to the numerous items they’ll be borrowing from me in the future. Really, I do. We have a nice quiet dinner throwing job ideas around, laughing about old times. It will be nice to have them in Salt Lake. They leave for the night and I take the maximum dose of ambien knowing it will be a restless night if I don’t; still can’t stop thinking about the lab results.
Thirty minutes later the ambien starts to take effect. It acts fast and hits hard. It reminds me of the type of exhaustion you experience as a child; your body begins to shut down, your eyes won’t stay open, but for some reason you fight it. At that very moment, the moment when I’m about to collapse from drug-induced exhaustion, I decide it would be a great time to call my friend Tracy who lives in Portland and is a nurse. “I’m gonna get some answers about this lab work,” I most likely said out loud. Or maybe she called me? It’s a blur. I remember saying hello, but that’s about it. I awoke five hours later. The light was on. The TV was on. I was fully clothed and very confused. I turned the TV and light off, pulled my clothes off and climbed into bed. Apparently, Tracy and I talked for some time and I remember nothing of it. Like a heavy night of drinking without the hangover. I like this stuff.
On Wednesday Liz returned with a sandwich and her husband. James is his name and he seems just as cool as Liz. Both of them have a comforting presence. I barely know either one of them, but feel perfectly comfortable around them. They didn’t stay long. I was sleeping when they arrived and I think they felt bad for waking me up. I enjoyed their visit and later the sandwich.
The rest of my week was pretty uneventful. The strange looks from the dentist continued (next week I plan on ambushing him by the bathroom. I’ll grab him by the collar, force him into a closet and demand answers, “What do you want from me?” He’ll plead for his life and I’ll let him go. On second thought, better not,) I slept more and more during chemotherapy, occasionally waking to a loud snort I knew to be my own. Liz popped by again on Friday to show me some artwork her friend would be donating to a silent auction that Stacy and her are planning to host for me on February 9th at Sugarhouse Park (more info to come,) and also to bring me some food. Went swimming again, nobody was rescued. Fell in love with the Clint Eastwood westerns of the 60’s, and slept a lot. Tuesday I go in to see my doctor and get some answers to my lab questions. I will let you know as soon as I do. He’ll probably say it’s nothing. Until then, avoid ambien before phone calls, allow yourself at least thirty minutes after eating before swimming, and most importantly, please don’t pull your own teeth.
Friday, January 22, 2010
I apologize to everyone for taking so long to get this blog up and going. I really haven’t felt like doing anything lately. This whole “battling cancer” thing leaves me worthless most of the time. Ha, battling cancer, every time I say that I picture myself in medieval armor, sword fighting a big blob of cancerous cells and hacking away at it bit by bit. So far I’m winning.
Anyway, it's been a strange couple of months. About three months ago I found a little mass on my right testicle. The day before I had gone for a long bike ride and nothing in that general area felt right, so I dismissed it. But four days later, it was still there. The next day I attempted to schedule an appointment at my old Primary Care Physician's office (I don’t have insurance and I had not been seen there in years) but was told I would have to wait three weeks. I called a couple of Insta-care facilities and was told that they had no ultrasound machine, which would be needed for a diagnosis. So I went to the ER. Three hours and half a book later, I finally see a Physician's Assistant who tells me he feels nothing, but decides to order an ultrasound just to be safe. About a half an hour later he returns and says that they do not have an ultrasound tech working and the on-call radiologist does not feel confident enough to perform an ultrasound (by this time it's 8:30 p.m., I’ve been there for six hours and had to get my shift at work covered.) He then gives me a number to a clinic in Sugar house and tells me to schedule an appointment with them on Monday. Monday comes around and I leave a message with the clinic; two days later no response. I call again, leave another message and still no response. Finally, frustrated and now feeling some pain in my testicle, I call an old friend who works in radiology at the U and explain my situation. She tells me that most likely the Sugarhouse clinic was not responding because they do not have an ultrasound. What, they couldn't call and tell me that? She gets me scheduled for an ultrasound a week and a half later, by which point I am unable to ride my bike because the pain is so bad.
The ultrasound tech performs a lengthy procedure, sliding what reminds me of a video game controller covered in lubricant over one testicle, then the other, and then repeats. Her silence worries me, but I say nothing. She vanishes for a few minutes and then returns with the Attending Radiologist. Not a Resident, an Attending, which scares the hell out of me. It’s like going to withdraw money from the bank and having the teller return with the bank president; it can’t be good. He takes command of the slippery video game controller, looks around for a few more minutes and tells me to get dressed and to meet him in his office. When I get to his office, he's already scheduled me an appointment with an Urologist for the following week. He tells me not to worry, "It's probably just an infection." Relieved, I go home and try not to think about it.
The following week I go to see the Urologist convinced he'll give me some antibiotics and I'll be on my way. They draw blood and take my vitals. I tell my story to a Nurse, a Nurse Practitioner and finally the Doctor. He looks at my blood work, the ultrasound results then tells me it is cancer and the testicle needs to come out on Monday. It's Friday. "The good news," he says, "is that we caught it early, but we won't know anything more until we get it out and have a look at it."
Monday rolls around and I go in to have my testicle removed. My loyal friend Chris volunteered not only drive me, but to wait until I was done, take care of my prescriptions, drive me home and get me settled(thanks Chris). At this point he was one of the few people who knew about my situation. I figured if pulling out the testicle solved the problem, no one else needed to know. We arrived at the hospital late in the afternoon. They immediately took us back to a room and had me change into a hospital gown (the type that exposes your ass no matter how tight you tie it). Chris and I sat and watched bad reality television in between visits from nurses, anesthesiologists, surgeons, residents, and even hospital case workers suggesting I put together a living will. I’m thirty-one, I’ve never once thought about putting a will together. I suddenly realize the severity of the situation. I could die. Just as I begin to drift into panic, a female resident enters the room, informs me she will be assisting in the surgery and has come to mark the appropriate testicle. She lifts my gown and puts an X on the right side of my scrotum and thigh. She leaves the room and Chris says, “Dude, you just got to third base.” The fear makes me laugh a little harder than I should have, and I feel better. Once again, thanks Chris.
Surgery is a strange experience. The anesthesiologist comes in, sticks a couple of needles in my IV and tells me I’ll feel awesome in about 5…4…3…2…1. I felt great at 3. They wheel me back to the OR. At this point I’m feeling so good that I’m rambling on and on about absolutely everything and nothing. At some point someone puts a mask on me, floods it with gas and I’m out. I think the best way to describe general anesthesia is lost time. It’s similar to accounts from alleged victims of alien abduction. “One minute I was watching Wheel of Fortune on the sofa, and the next I’m waking up on the roof of my trailer with my ass hurtin’ something awful.” Only in my case, one minute I was in the OR and an hour and a half later I’m in the recovery room with the strange feeling that only seconds had passed and a sharp pain in my pelvic region. A nurse is standing at my side telling me to breathe. Was I not breathing? It felt like I was. I take exaggerated breathes to shut her up. Apparently, a machine had been breathing for me for the last ninety minutes and it sometimes takes a while for your body to remember how to breathe on its own. They watch me for a while, and then allow me to get dressed and stumble out into the waiting room to find Chris. At this point I’m not sure if I feel light on my feet because of the drugs or because I’m now one testicle lighter. I decide not to think about it. The drive home is a blur. I think we stopped to fill my prescriptions, but Chris may have dropped me off at home and went on his own. Either way, I made it home okay.
The next week was pretty rough. Highlights include: eating laxatives like candy in an attempt to poo, drug induced hysterical laughing at TV commercials, followed by tears of pain from laughing, cursing and assaulting the television with the remote, followed by more pain while trying to sit up to retrieve said remote, sleeping, more sleeping, and yet more sleeping.
Confident that the source of my cancer had been removed and I was through the worst of it, I go in for a chest/abdomen CT and a follow up visit with my Urologist. “It’s definitely cancer,’ the Doctor informs me, “And it has spread to some lymph nodes in your chest and abdomen and also your lungs.” I was shocked. I thought for sure that the surgery would be the end of my ordeal. I didn't even feel sick. He scheduled me an appointment with an oncologist, assured me that this type of cancer was very treatable and wished me well. For the next couple of days I awaited an apologetic phone call explaining that there had been a mix up and that the CT scan they thought was mine had turned out to be that of a Miles Hobbes or a Mike Nobbs, but that call never came.
A few days later I met with the Oncologist who planned out the chemotherapy and scheduled a port placement. A port is a little device that is placed just under the skin on the right upper chest which taps into a vein and allows medical staff to access my circulatory system without having to place an IV every day. The Oncologist said that because I was young and otherwise healthy, they were going to be very aggressive: four cycles (each cycle lasts three weeks) of Bleomycin, Etoposide and Cisplatin (chemotherapy drugs). I started six weeks ago, and with the exception of an overnight stay in the hospital for an extremely high fever, I’ve been doing pretty well. I’m always tired, but have not lost my appetite and have not been vomiting. I haven’t lost any weight; I actually may have gained weight from inactivity. I’ve lost most of the hair on my head and have taken to shaving the rest of it. My schedule breaks down to this:
Week 1, Mon. - Fri. I have chemotherapy for seven hours a day (I usually sleep for most of the weekend after this week. It’s exhausting.);
Week 2, chemotherapy on Tuesday only for two hours and the same with week three and then it starts over
(The drug they give me on week two and three gives me flu like symptoms that can last from a few hours to a few days.) The Doctors have given me a 65-70% chance of full recovery. I am in Stage III a. I am extremely positive and know that I will get through this thing. It’s very hard to contact me right now. I’m either at the hospital, (where I get no phone reception), sleeping, or some days I feel so horrible that I just don’t feel like talking. So please don’t be offended if it takes me a while to get back to you, it’s nothing personal. I will do my best to keep this blog updated. Thank you all for your support. I hope to see you all soon.