It's Been A While...

So I guess I've been a little lazy with the updates, it's been well over a year since my last one. There really wasn't a reason why I haven't, but I guess things were pretty boring with the exception of a few events. I'll try to keep this more updated from now on. I'll try to write about some of the things that have happened in the last year and some things I learned from going through chemo and hopefully it'll be helpful to anyone going through cancer/chemo to read this.
Immediately following the last update I finished my last round of chemo and it was a pretty great feeling. I'd go as far as saying that along with my solo ascent of Mt. Everest and winning the Nobel Prize in Chemistry , it was definitely one of the Top 10 greatest feelings I've ever had. On top of that, I was given one of the greatest surprises of my life. Kristin worked behind the scenes and for my birthday got me on the field with Coach Frank Beamer and Coach Billy Hite during one of the VT practices. They were awesome guys and I was pretty pumped. So, back to cancer stuff... everything was looking good after chemo was done, but right before the VT vs Florida State football game last year, I started getting the chills and a fever. I called up Sloan-Kettering and they told me to come in. By the time I got there my fever hit 102. They did some tests and it turned out my White Blood Cell count was zero. White blood cells have Neutrophils in them and are together they are responsible for fighting off infection. So I essentially didn't have a functioning immune system. When it gets that low, you can get an infection from simply brushing your teeth. So I was admitted to Sloan-Kettering and put on 24 hour IV antibiotics. I was on the 12th floor with the other blood cancer patients and it was a pretty surreal feeling. I had a guy next to me, Daniel, who was a year older than me and had lymphoma that turned to a leukemia. He was having a tough time and it was heartbreaking being next to him. Even though there was a curtain separating us I could hear him not doing to well and my mother even had to help him after he fell in the middle of the night on his way to the restroom. Daniel unfortunately passed away early this year... that was a tough pill to swallow. There were also people on the floor that were doing amazingly well. There was this lady that was power walking around the floor for what seemed to be hours a day. It was incredible. I actually felt fine, but power walking is against the man code, so I had no part of that. People had to wear face masks though when they were around me and that was freaky to say the least. The cherry on top was that they had to do another bone marrow biopsy. There's no real easy way around this one... it sucked as much as it did the first time and it really sucked the first time. Anyway, after 5 days there, I got woken up in the middle of the night by a nurse and she told me my white cell count went back up and I was going home the next day. It was a great feeling. For about two month after that they were closely monitoring by white blood cell count and it's completely normal now. After that bump in the road, things have gone pretty smoothly. I got married to the perfect girl for me, went on an amazing honeymoon, and after a crappy 2008 work year, 2009 was enjoyable and fun. And I'm also proud to say that I just had my 1 year Remission Anniversary!!

This next part is just going to be a list of some things I learned since being diagnosed with lymphoma, going through treatment, and the year since remission:

-Rule #1 is go the best cancer center within a days drive. If you live in the NYC/NJ/CT area, go to Sloan-Kettering, Columbia Pres, and Foxchase, West Coast has Stanford, Northwest has Hutchinson, Northeast has Dana Farber and Rochester, SouthWest has M.D. Anderson, MidAtlantic has Johns Hopkins, etc. It's so easy to go to a local doctor who recommends their local oncologist and you stay at your local community hospital. It's comfortable and familiar and I understand that. But sticking with those smaller, inexperienced hospitals could be a big mistake. You HAVE to at least get a 2nd opinion from one of the hospitals I mentioned. Three quick notes to give you perspective: 1) At Sloan-Kettering, 10% of the people that come in are misdiagnosed. Either they have cancer when they were told they didn't, they were told they had cancer and they don't, or they were told they have the wrong cancer. 2) A friend of the family went to a very reputable NJ hospital after not feeling well. Tests showed some spots on his liver and lung. They told him he had lymphoma and even though they weren't sure which kind it was, they wanted to start him on chemo right away. He was able to get in to Sloan-Kettering two days later. Turns out he didn't have lymphoma, he had Stage 2 Lung Cancer. He could have gone through a chemo regimen that would've had no effect on his cancer. Crazy. 3) The issue I had with my white blood cells was something that most oncologists will see once or twice in their career... my guy at Sloan sees it almost 10 times a year.

-Everyone has their own advice on how to get through cancer diagnosis, cancer treatment, and survivorship. You'll hear about eating healthy and organic, praying and going to church, "Live every day to the fullest", do your research, etc. All of things most likely help but I realized very early on that none of these will cure me. If any one those cured me, there would be a cure for cancer and we'd all just do that one thing. Not to minimize the advice above, but for me personally I needed something to help me mentally deal with cancer and I realized that there's one thing above all that will get you through it and I can't stress this enough... you HAVE TO COME TO THE REALIZATION THAT THIS IS REAL. It's not a dream, it will most likely not miraculously disappear. There's going to be some tough times ahead, there's going to mostly be some completely normal times ahead. But as soon as you can come to grips with the fact that you have cancer and you've got a fight ahead of you, the better you are. That realization did more for me than any research or advice had ever done.

-A caregiver can't possibly understand what it's like to go through chemo and the mental anguish of knowing you have cancer AND a cancer patient can't possibly understand what it's like to have to watch someone you love go through chemo and the mental anguish of cancer. Sure, the caregiver has a slight upper hand because they have a 0% chance of dying from the cancer patients cancer, but I couldn't imagine having to watch Kristin or a family member or close friend going through everything... in many ways I imagine it to be worse.

-Be careful what you read on the internet about Lymphoma and probably all other cancers. As far as lymphoma goes, most people (including myself) get diagnosed at Stage 4. The survival statistics deal with people that died for any reason, not just from lymphoma and since most lymphoma patients are older, the statistics are skewed. And there's TONS of research on new drugs going on right now, 10-15 years from now I really feel like it may not be cured but can be controlled.

-"Hope is a good thing, maybe the best of things, and a good thing never dies"- Shawshank Redemption. As far as I know, there's nothing out there that will 100% kill you within 5 or 10 years. Maybe there's a cancer that will do you in 99.9% of the time, but that still leaves 1 person out of 1000 that will make it. There's absolutely no reason that can't be you. No matter how bad things get, no matter how many consecutive bad test results come back, not matter how long you stay in the hospital, and no matter how many treatments don't work... until you're dead, you have hope.. hang on to it for dear life. Related to that is positive thinking... If you get a bad result, maybe the next one will be good, if that one's bad, maybe the next one will be good. A good video of this is here... Will Ferrel stays positive till the end. This isn't very PG so watch who's around you before you view it: CLICK So whatever will give hope, whether it's a family member, a friend, a hobby, a religious belief, just use it to make sure you always have hope.

-I've always heard cancer patients that are in remission say, "I couldn't have gotten through it without my family and friends." I was interested in finding out if that was just lip service or if it was real. And if it was real, in what way? So after chemo I can say that it is for real, at least mentally. I mean, you can physically get through treatment with nobody around. You can take a cab to and from treatment and just kind of get through it and your outcomes will probably be no different than if you arrived on one of those Egyptian mats with huge guys carrying you in and out of the hospital. Mentally, is where it's helpful. Not because people say, "You'll be fine!" or whatever. For me it was because I didn't want to let this cancer get me so soon. When you have people around you that you care about, you want to spend as much time as possible with them before it's all over. Now, I'm not unrealistic, fortitude and mental strength won't cure lymphoma, but having family and friends that I love so much made me want to stick around.


Well, that's all I've got for now... this may not have been the most humorous of posts, but there was a lot to catch up on! I'll try to keep the updates more frequent now... at least after each update.

GO HOKIES

1 More Left and Some Great News

Sorry it's been a few weeks since my last post. I'll keep this one pretty short because I'll most likely write a kind of long one after treatment's over. Anyway, I only have one more treatment left this coming Thursday and then it's over!!! And on to the great news. I had to get a PET Scan after the 4th treatment to see how well the chemo was working. The results came back negative for cancer in my lymph nodes and organs! I'll still have to get another bone marrow biopsy about a month and half after treatment ends to see if cancer is still in there, but with this cancer, you can still be in remission even if cancer is in the marrow. Also, I can't call it remission until after the 6th treatment, so I'll have to wait until next week for that. But, this was the best possible result to get in the quickest amount of time to get it. They think that this result will mean a longer remission and that I have a cancer that's susceptible to chemo, both are very good things. Lastly, I'm not sure who organized it, but THANK YOU for the celebration that was put on for us outside after we found out my PET Scan was negative. I was able to video it and here's the link. http://www.youtube.com/watch?v=YUrOMB-iBLk
Well, thanks again for all the well wishes and calls and everything!

Half Way Home

Sorry I didn't write after the third treatment, but better late than never. There's not really much news to report, which is good. This time there were no Woogie like reactions and the whole treatment only took around 5 hours, which is about 3-4 hours less than usual. My oncologist says that I'm still on the path I'm supposed to be as far as the treatment working. The tumors on the left side of my neck are gone and there are a couple sticking around on the right side, and I'm hoping they get down to Wolffia Augusta size as my friend Todd mentioned in his comments to my last post. I have to get a PET and CT Scan after this next treatment to see how well the treatment has worked. While the allergic reactions have pretty much disappeared, I've had a trade off with feeling pretty lousy right after treatment. It kind of feels like being injected with the flu and a really bad hangover at the same time. That's pretty much it for now, but I guess it's good not to have to much to write about. Outside of fatigue, I'm very lucky to have been dealing with limited side effects. Well, after this Thursday I'll be 2/3 of the way there. Thanks again for all the emails, letters, and visits!!!

2 Down 4 To Go

Sorry that I haven't updated the Blog since my last treatment. I was on so much Benadryl during the treatment that I couldn't write and was pretty groggy during the week, so now that I've got my second treatment under my belt I feel a little more comfortable with the side effects. The two weeks following the first treatment were pretty boring. I didn't have much nausea, the only real side effects were jaw pain and lots of fatigue/dizziness. I started this second visit with a MUGA test to see exactly how much blood my heart was pumping out. I'd describe what that test is like, but it's pretty boring. All that really matters is that the test came back showing that my heart is fine. After the heart check-up we met with my oncologist again. That meeting went real well and they were even surprised by how quickly and dramatically my tumors have shrunk. The only thing I can personally use as a reference is the one lymph node (tumor) that was on the right side of my neck where it meets my jaw. It had been the size of a peach pit for years, after the first treatment it went down to the size of a grape, and now only 1 day after my second treatment it's about the size of a blueberry. I'm hoping for an even smaller fruit simile to use on my next post. They were most surprised over the decrease is size of some of the tumors in my groin and even more so about my spleen. So, things are going along as we were hoping so far. They are still obsessed with with my having bowel movements, it's amazing. I forgot to ask why, but I'm going to on the next visit. Luckily for me, along with macrame and interpretive dance, bowel moving is something I excel in. I had two pretty bad allergic reactions during the first treatment. I'd be swamped in sweat and then would break out in hives. I pretty much looked exactly like Woogie from There's Something About Mary. A Benadryl/Steroid combo took care of that, but it ended up taking about 9 hours for the first treatment. This second treatment went much quicker, but I still had one Woogie reaction. The only difference was that instead of profusely sweating before my Woogiemorphesus, I got the worlds worst cold symptoms all in two minutes. i couldn't stop sneezing, my nose was running and then became so stuffed that I sounded like Henry Kissinger (without the accent and sexy, come hither look). I think this second treatment has taken a little more out of me so far than the first one did, but I think this coming week will be better since I'll know what to expect. Finally, I'd like to send a note to my new friend and fellow cancer fighter Anna: I was so happy to hear your great news! Hang in there, you're an inspiration, and since today is the 69th Anniversary of Lou Gherig's farewell speech, it seems only right to quote him, "I may have been given a bad brake, but I've got an awful lot to live for." To everyone else, thank you so much for the constant calls, texts, emails, and visits. It's impossible to let you know how much easier this all is because of all of the things you guys do.

I've Got One Hand In My Pocket, And The Other One's Taking Chemo...

So I'm sitting in a hospital bed getting ready for some Chemo... it's a pretty strange and very surreal feeling, but anyway the hourly live updates probably won't be happening because I'll be receiving high dose Benadryl in about a minute here and it will most likely knock me out. Just to give a couple of updates.... I originally thought that I'd be getting treatment every 3 weeks, but my spleen decided to go ahead and be extra Cancery so I'm going to have to get treatment every two weeks. Also, some heart tests they did on me came back with a possible problem. I may not have enough blood being pumped out of my heart, so I have to have more tests to see if that's something to be concerned with or not. There's a thought that it could just be due to an inaccurate test machine. I thought that maybe a piece of sausage was stuck in a valve, but no luck. So, as for Chemo... you don't actually get called in to receive it for at least an hour after your appointment time. After that you get an IV with saline, two anti-nausea drips, you take 2 Tylenol, 1 Anti-Nausea pill, and a bag of Benadryl. The first 3 types of Chemo will take a total of 45 minutes, the last drug, Rituxin, will take about 6 hours. Outside of of hearing I might have a heart problem, I was most surprised at how many pills I'll have to take each day. AND I've never been in a place where they care about constipation so much. Everyone here keeps saying that I need to "move my bowels" everyday. The last drug will be Predisone which is a steroid and I'll be getting a very very high dose of it, there's usually a feeling to Euphoria associated with it... can't wait for that. One of the drugs I'll have to take after treatment is a needle of Neulasta to help my blood cell count, and I may have to administer it myself. I'll film that if I do. I'll write more in the next couple of days, I'm pretty tired from the Benadryl. Thanks everyone for the well wishes, they mean the world.

So, I went to a Sperm Bank.....

Yes, you read that correctly. Chemo has a slight chance of permanently taking away my baby makers, so I had to go to a sperm bank. I normally wouldn't write about something like that since it's really weird and I have relatives that read this blog, so I have no plans of getting to detailed if you know what I mean. You can find that entry at www.feedthegeese.com (just kidding, I have no clue if that website exists). Anyway, I had to go in to NYC for the "deposit" and didn't really know what to expect. My only reference was the movie "Road Trip" where the guy that plays Stifler gets brought in to a room by a hot nurse. This couldn't have been more different from that. The place I went to was a very small office with a waiting room (which was empty) and a secretary sitting at the desk. If you ever want to feel uncomfortable, just go sit in the silence of a waiting room at a sperm bank where a young lady is sitting at the reception desk. I asked her if she felt as uncomfortable as I do and she said she didn't, but unless she was in the porn industry I'd imagine it would be tough not to feel uncomfortable. Eventually a doctor enters the waiting room and gives you the low down as far as what testing goes on, the storage of everything, and some pricing. After that, the doctor walks you to a room and show's you where everything is. The doctor closes the door and there you are, all alone, with only one thing to do. To answer the most obvious question, yes there are magazines and DVD's and a plastic cup sitting on a table. I took the first 5-10 minutes just taking everything in and giggling. There are DVD's for every "taste" with the exception of Gay Porn. There's a chair that slightly reclines and a protective covering over it. The weirdest part was probably the fact that you can hear the secretary shuffling her papers and talking on the phone while you're in the room. That completely took away the option of putting on a DVD. I completed my mission. After walking out of the room the secretary's desk is right in front of you and she just looked up at me. I wasn't sure what to do so I asked her if I was supposed to smoke a cigarette. She kind of laughed, but not too much. I paid the bill and she said I should call the next day. I asked if that was so the the plastic cup didn't think I just used it for the night and don't plan on calling even though I said I would. She laughed a little more, but still not a lot. She's probably heard every joke possible about that situation anyway. So, that was it, that's what it's like. It's very uncomfortable, unromantic, and to the point. In an update since my last blog posting, my people finally received an answer from my cancer's people regarding my offering of becoming fat on my own instead of cancer/chemo doing it. Their response came in the form of an envelope and in that envelope was only one thing. A cut out of Telly Savalas' head crudely taped to the body of Dom Deluise... Touche Lymphoma, Touche.

C-H-E-M-O and Chemo was his name-o!

So yesterday's 9 month check up was pretty much the equivalent of George W. Bush's tenure as president: Too long, lots of bad news, lots of head shaking (left to right, not up and down), a constant feeling of "this sucks" was felt, and we couldn't wait for it to be over. It turns out the tumors (lymphnodes) in my abdomen decided to start growing some more. There are actually a lot of tumors in my abdomen and while science can completely refute this, I feel as though they are the main cause of my gut and weight gain. It has nothing to do with poor eating and lack of exercise, it's all about the tumors. Anyway, my doctor decided that now would be a good time for me to start chemotherapy. If there is any good news to come out of this, the whole idea behind monitoring my cancer's progression was to catch it in that moment before it gets out of control and treat it at that time. It looks like we've done that and my doctor feels pretty good about my chances for remission. With that said, there's no way for him to know whether the remission will last for 8 months or 8 years. The median duration of remission for someone like me is 5 years, but there are cases on both sides of the spectrum in which people have lasted less than 5 years and much more than 5 years. I offered up an idea for a clinical trial in which they test the duration of remission in a patient receiving this chemo (me) while this person lives in Blacksburg, VA for free during football season, gets a luxury box at the games, and gets to be a guest coach for one call a game and choose the next play. The secondary endpoint of the study would be to see how many consecutive days I would enjoy a 1 hour full body massage while on chemo. I feel as though this would be a pivotal study in the social and emotional aspects of cancer treatment. Unfortunately it fell on deaf ears. I have a PET Scan coming up and that will help determine the exact treatment I'll get but it's most likely going to be something called R-CHOP. And guess what, one of the side effects is weight gain. Not weight loss like most chemo patients, but weight freaking gain. I plan on extending an olive branch to my cancer and let it know that if it's plan this entire time was to make me fatter, we can call it even right now and I'll gladly do it myself if it decides to leave. As of the time of this posting my people have not heard back from it's people. If R-CHOP is chosen, it will last 18 weeks and I'll receive treatment every 3 weeks, with the first treatment either on 6/19 or 6/20. In an ironic twist of fate, I'll be the first of my many balding friends to actually go bald after easily having the best hairline and most hair out of them for the last 28 years. I'm sure I'll have many many more postings after chemo starts and am going to attempt an hour by hour live update of my 1st or 2nd treatment. Well, I'm sorry this post wasn't as joyful as the previous ones, but this was bound to happen eventually. I'll write more when I get more info about what's going on. Thanks!!!

6 Month Check-Up

So I just had the sixth month check up and it all went well! My platelets actually went up to 140k and my doctor said I'm in slightly better condition than last time, which of course can change at any moment. I know I've talked about what it's like when the doctor comes in the room, but I don't think I've mentioned what the vibe is like in the room before the oncologist comes in. First off a nurse come in and takes my blood pressure (which is generally good, but a little high because I'm about 30 minutes from finding out if my cancer is better/worse), takes my temperature, and then weighs me (which is always demeaning, and the nurse actually laughed a little at me today). Then we just wait there for the oncologist or his co-worker to come in. The following clip is pretty much how my parents, Kristin and I sound when talking during that time between the nurse and oncologist.. http://www.youtube.com/watch?v=FfZ8yVcnLPs Not much else to add here, but I want to thank everyone that has given money to the Hike For Discovery. Some of you made some truly incredible donations, but all of them have meant a lot to me. I'll try and keep the updates a little bit more frequent then before. Thanks.

Heavy Breathing For Discovery

Hey Everyone... it's been a while since I last wrote, so I apologize for that, but nothing too exciting has happened. I have my next visit on 2/7 for some blood tests, so I'll be able to give some more info then. This post is about a Fundraising event that myself, Kristin and our two friends Sara and Chris are doing. It's called Hike For Discovery and it's raising money for the Leukemia & Lymphoma Society. It's a long ass hike in the Rocky Mountains in June and I need to raise $4,500 to do it. That definitely seems like a large number, but I'm more concerned with the actual hike. I've gone on a few mini-hikes before, but I'm not a Hippie so I've never gone on a long, multiple hours, multiple miles, and multiple thousands of feet in elevation kind of hike. The training for this hike is pretty much every weekend and I have to buy a ridiculous pair of high top hiking boots. What will most likely get me through the entire hike will not be the feeling I'll get when we reach the summit, not the determination to not let cancer hold me back from such a physical feat, not the fear of letting everyone down that donates money to the cause, but one simple thing: The pure joy of watching my beautiful wife to be, Kristin, get the shit scared out of her every time she hears a noise from the forest. She's scared to death of a bear/mountain lion attack. So scared that she's going to buy something actually named "Bear Repellent". It sounds like something that should be on Batman's utility belt and I don't think she'd be able to get it open in time to stop a bear anyway, but she will probably be the first and last person in the world to buy that stuff, which by all estimations is just water. Now for the part I hate, here's the website I have if you'd like to donate money to Hike for Discovery and towards my goal of $4,500. You can donate $1 or $1,000,000 or whatever, I'd greatly appreciate anyone giving away any amount of money they earn for something that can help people. Here's the link: www.active.com/donate/hfdnonj/lymphomawedgie I'm going to always put this website up on the top of the blog so it doesn't get lost in the updates. Thanks ahead of time to anyone who donates and I'll post another update after my appointment on the 7th. Go Hokies.

What The Tests Feel Like

As promised from about 2 months ago, I wanted to describe what each of the different tests feel like. There are pretty much only 4 tests that get done: PET Scan, CAT Scan, Lymph Node Biopsy and a Bone Marrow Biopsy. They are done at different frequencies depending on the disease state. A Lymph Node Biopsy is done to confirm whether or not you have cancer, the bone marrow biopsy does the same, a PET Scan shows where in your body the cancer is and a CAT Scan shows the sizes of your lymph nodes or tumors. So on to the specifics:

Lymph Node Biopsy: I've had two of these, one was under general anasthesia and one was with local (just a few injections of novacane). If ever again I get the option to have something done under general anasthesia or local, I'm going with local. With the local surgery I was able to walk out of the office and drive home. I was useless for a few days after general. There's some pain after the surgery but I never needed pain killers and since both of mine were in the groin area it was tough to walk, bend over and sit down for a few days. There's also a good amount of swelling and bruising for a few weeks. You get the results in about 3-4 days (of longer if you go to a crappy surgeon with a crappy lab, like my first one) This is a link to an actual inguinal (groin) lymph node biopsy. it's pretty graphic so you may not want to watch and you need a You Tube ID to watch it, but it's interesting. http://www.youtube.com/watch?v=ulfNSnawIws .As a side note, my lymph node was not as big as this one and that's a very good thing.

CAT Scan: I've had 1 of these so far and It kind of sucked. The actual test was short but you have to drink about a quart of a mixture of a medicine and Crystal Light. It was raspberry flavored and wasn't half bad, but you don't have long to drink it and if you drink it too fast you get nauseaus. So after you've drank this stuff you pull your pants down and lay on a table. At your feet is a big circle that you slide in and out of. I'll try to describe this tastefully, it's like you're an ice pop and the circle is your mouth and you're moving in and out of it... and the ice pop's name is "Richard". Once you lay down and the machine is calibrated they put an IV in to you that allows for a better picture. They say that it will give you a warm feeling in some places and may make you feel a little sick. As soon as the nurse said that, my chest caught fire and it moved throughout my body and then stopped. That all happened in like 20 seconds. But THEN, the nausea started and didn't stop till later that night. I was able to get through it without vomiting, but it was very close to this scene....http://www.youtube.com/watch?v=STB4s7Qhf40 . You get these results in 2-3 days depending on the lab.

PET Scan: This one is pretty basic. You have to drink a chalky milkshake like drink about an hour before it and then you get an IV of some radioactive stuff, but it doesn't make you feel weird. You go in to a machine very similar to the perverted CAT Scan machine. You can get these tests back in a day or two.

Bone Marrow Biopsy: This is the biggie. There's no one way to describe it, but it doesn't feel good. Some people say that it's the worst pain they've ever experienced, but I'd imagine that natural child birth or some major injury would certainly feel worse. Kristin came in to the room with me and watched it and by the way it felt, I bet it looked pretty wild. The doctor's started the procedure by saying that it would hurt and kind of described what would happen and which parts would hurt. The place that bone marrow biopsies are most often taken is the pelvis, which is the lower back. They can numb the skin and the periosteum (the layer of nerves around your bones that causes pain when you break one) but they can't numb inside your bones. So it begins with a needle and novocaine in the small of your back. It's a pinch and a burn, probably what it feels like to pee with the Clap, but it's on your lower back. Then another needle is put in and put in the peritoneum around the bone. When the doctor put this needle in he had trouble getting to the spot he needed it to be and while he was pulling the needle out it he kept the pressure on the needle and the contents exploded all over my back and Kristin's face. At first I thought my bone exploded, but then I realized that only an jackass would think that and we all laughed. Anyway, the needles hurt a little worse than normal needles, but it's tolerable. After the novocaine is working they get a larger needle and use it to puncture your bone so that they can withdraw some bone marrow. Here's a short clip of part of that, you can kind of see how much pressure is needed to get that second needle through the bone. http://www.youtube.com/watch?v=pGSPMkQ6Qk4 . This part doesn't hurt all that much, it just feels like a ton of pressure on your lower back. Once the needle is in the bone they aspirate or suction out bone marrow. This is the real crappy and painful part of the procedure. The best way to describe it would be to say that it's like the feeling you get for that split second after you twist your ankle or that split second feeling you get after you bite your lip, and extend it for about 10 seconds. I think they did two rounds of that. The last step is to actually remove a very small corkscrew like section of your bone. They insert another instrument and just like opening a bottle of wine, they turn the instrument in your back and pull out the part of bone they need. Here's another video of a bone marrow biopsy. This one is really weird, but it gives you a sense of the discomfort from the guys face during certain times. http://www.youtube.com/watch?v=pGVN4i7vczI&feature=related. You get the results from this test in 4 days or so.

Well, that's the best way I can describe what they're like. This was a little less about humor and I tried to make it informative for anyone that gets lymphoma because this info was some of the most frequent things I asked about. Not sure what I'll write about next, but I'll try to write something before my 2/7 doctors appointment.

Another quick Way to Help

If you read that Newsweek article and want to add your name to a petition, you can do so here. You just have to type in your name, town, state and zip. http://www.lymphomation.org/CMS-endorse-RIT.htm Thanks!!!!!

A Little Political Action and Video Emotions Part 2

Sorry it's taken me a while to write an update. The first thing I wanted to write about is in regards to a type of treatment that I'll eventually need called Radioimmuno Therapy. I won't write about the details, but I hope all of you will read this:
http://www.newsweek .com/id/70301 . The Government is going to take away Medicare coverage for this class of drug and I won't be able to get it when I need it which can definitely take tens of years off of my life expectancy. The article will explain why I would care as a 28 year old about it, but the vast majority of people with lymphoma are on medicare so if they can't use this drug the companies will have no choice but to pull it from the market. This will also discourage other companies from doing further research on this type of treatment since they won't be able to sell it since Medicare won't cover it. I don't like pushing any of my beliefs (political, religious or otherwise) on most people, but if you feel inclined to write your senator and/or representative you can find out how to get their email address and exactly what to write at this link:
http://www.lymphomation.org/CMS-call.htm#email . Ok, on to the fun stuff.......

1) So, as my last post said, I just had my 3 month check-up so that my doctors could check to see if my platelets dropped at all and/or if my lymphnodes had grown. The doctor came in the room and said that my platelets went up to 125,000 and the lymphnodes didn't grow. It's hard to describe what it's like once the oncologist comes in and the four of us (my mother, father, Kristin and I) get whatever news he has and then start the barrage of questioning. Some questions are great, some aren't, some have been asked before, most haven't, but there's usually a lot of them. In any case, the following clip shows what it's like. The four of us are McCauley Culkin and the oncologist is John Candy.
http://www.youtube.com/watch?v=YZMWgW6QNuw&feature=related

2) I've spent pretty much zero time thinking about death, but the only thing that's certain is that I'd like this guy to sing this song at my funeral regardless of whether it's in 60 years or 5 years (disclaimer: I'm 98% sure this guy is NOT mentally challenged) The last 30 seconds are priceless:
http://www.youtube.com/watch?v=6lHHQu4CIos

3) My parents, Kristin and I went to see a specialist talk last night about lymphoma and what he said was encouraging. There are more and more people going in to remission for 5, 6, 7, 8+ years and a cure may be out there, it's a matter of time before they know for sure. What he reaffirmed is that my age and health are the best things you can have in your favor when you have lymphoma. To put this in perspective, all Follicular Lymphoma patients have a good chance to do well, but I have a slightly better chance because of the aforementioned things. To help visualize this please view the following clip. (I'm the guy on the left and elderly people are on the right) The lesson: we may both have a good chance, but I have a slightly better chance.
http://www.zippyvideos.com/8027910571190176/snl_-_chris_farley_-_chippendales/

That's about it for now... I'm definitely posting next week on what all the different tests (lymphnode biopsy, bone marrow biopsy, CAT Scan, etc) feel like. There wen't many updates to this one since I didn't have any new news from the last appointment, but no news is good news. Till next time....

Quick Update

I'm actually in Atlanta with Kristin, Sal and my college friends so I don't have to time to write anything in depth, but I just wanted to give a quick update to my visit yesterday. I'll do a full report next week when I get back. As it turns out, my lymph nodes have not grown and my platelet counts went up, so I have a reprieve for another 3 months. I'll get a blood test at that point and have a CAT scan in 6 months. The biggest thing that this means is that I can drink for the rest of football season, Thanksgiving, Christmas and New Years. I'll write more next week with round 2 of "Video Clip Emotions". Till next time...

And The Winner Is.....

The following is an exerpt from yesterday's 1st ever Danny's Malignant Cancer Award Show that took place at Sloan-Kettering Hospital in gorgeous New York City. It was hosted by Danny's Belly Button and most of his body parts attended. On with the show:

Belly Button: The nominees for Cancer In Danny's Body are: 1) Marginal Zone Lymphoma in "His Bone Marrow Said It May Be Me". 2)Follicular Lymphoma in "I Was Present In Two Lymphnode Biopsy's". 3) Butt Cheek Cancer in "His Ass Is So Big There Has To Be a Tumor In It" and finally 4) Fingertip Cancer in "They Stopped Growing And Are Disproportionate To The Rest Of His Hand". And the award for Cancer In Danny's Body is................FOLLICULAR LYMPHOMA!

Follicular Lymphoma: Wow, this is crazy. When I was first mentioned as a leading candidate for the award I have to say I wasn't completely surprised since I'm the second most common form of Lymphoma in the world, but to beat out a nice push by Marginal Zone was a treat and seeing how big Danny's butt cheek is has really given me a sense of accomplishment. I'd like to thank Danny's White Blood Cells, specifically his lymphocytes, for abnormally dividing one day and giving birth to me. Although doctors have no clue why this happens, it did and here I am and it turns out I'm currently the only cancer in Danny's body, which is good for Danny but gives me nobody to talk to or watch Grey's Anatomy with. For those who aren't too familiar with me I'm a B-Cell Indolent (Slow Moving) Cancer that is currently at Grade 1 (small cell) and at around Stage 3 in my progression. Although, to be modest, Stage 3 with me is not the same as Stage 3 with other cancers like Lung or Breast. For me, there's virtually no difference between Stage 2 and Stage 4. You may be asking if I'll be winning this award every year and if I'm here to stay. I can tell you that I'll try like heck to stick around and, if at all possible, make things worse for my host Danny, but there are a couple of bastards at Sloan-Kettering that think they can control me for a long time. What sucks for me is that I ran this town wth nobody challenging me until about 10 years ago when a breakthrough in treatment occured and then about 5 years ago another one did. There's no current data following people Danny's age long term since these drugs came out, but in a study that started following people diagnosed and who had treatment initiated in the 80's, it would be about 16-20 years before I really try to eat away at Danny's organs like an unstoppable rebel force (Meet The Parents, 2000). What I've got on my side is that I'm unpredictable, very much unlike Virginia Tech's offense. I have no clue how I'm going to react to different treatments, how long I'll stay in retirement before coming back after treatment or if I'll one day decide to morph in to another type of cancer like Steve Urkel morphing in to Stephan on Family Matters. Traditionally, I'll go away with chemo and some medicines and then come back, it's just that I don't know when I will. What my greasy, hairy Italian host has in his favor are the two greatest factors in prediciting long term survival... Age and Health. He's young and outside of his waistline, he's healthy. Well, the Chest Hair Symphony is playing and I'm being told to wrap things up, so I can't wait to put this award on the shelf in Danny's Bone Marrow. Thank you again.


Side Notes: Hopefully you understood everything in the acceptance speech. Follicular Lymphoma is not the same in any two people so it's very difficult to give a prognosis without a lot of visits to the doctor. I'll be getting CT Scans and Blood work every 3 months (My first 3 month check-up is 11/1) and whenever something looks out of whack, I'll go on treatment. They said I'm about 80% there as far as needing treatment and would expect me to need it in the next few months. Follicular Lymphoma is very very unpredictable and you can only kind of go by generalizations such as: It generally doesn't turn to another cancer, it generally reacts well to chemo, etc.) It's genuinelly a wait and see type of cancer. SO, I'll know more on 11/1 and I plan on writing a blog in the next few weeks on what the different types of biopsy's feel like. Till next time...

Biopsy Number 2 And Video Emotions

I had my second biopsy today and they took it from my right groin. I've talked about how important it is to have a good surgeon and that was never more evident than today. The surgeon I had for my first biopsy in the beginning of August put me under general anasthesia and I was out of commission for about 4 days. When I woke up from that first surgery I felt like Spaulding Smails from Caddyshack right after he drank the cocktail with a cigarette in it.... for about 5 hours. The surgeon today just injected me with a bunch of novicaine, did the surgery in 20 minutes and I drove home. I should get the results in about a week. Now, some people have asked how I've been "handling" having cancer so I figured I'd go through my emotions that have video links with them.

To start off, when I first found out it was kind of like this clip (My emotions were the kid on the right and "Janice", the woman on the left is representative of anyone I've ever made fun of:
http://video.yahoo.com/video/play?vid=457250&fr=

When I woke up from the first biopsy I felt like the following, but I was whimpering:
http://www.youtube.com/watch?v=P2876sYkMX8

After I met with the doctors over at Sloan and realized that they had a plan for my lymphoma and that regardless of what happens, I'll have gotten the best care possible and given the best chance for a good, long life I felt like this (My emotions were Rodney Dangerfield):
http://www.youtube.com/watch?v=07SpB7kT3gw

FInally, if I ever happen to have a down moment I can think of this first clip and know that I'm better than at least 1 person in this world and when I think of the second clip I realize that there's still some things I need to stay alive long enough to see:
http://www.youtube.com/watch?v=KBm5ZSWbD14
http://www.youtube.com/watch?v=5h1EW5z1wdc

Till next time....

Talk About Your All Time Backfires

So I'm sure most of you hear that you lose weight when you go on Chemo. I never knew why you lost weight, but found out that it's generally because you feel so shitty that you don't feel like eating all that much or drinking alcohol. That pretty much takes away my pleasures in life (outside of Rhythmic Gymnastics, Nicholas Sparks books and Shoe Making). SO, I thought I was going to be on Chemo for a while and, even though it would suck, it would be a phenomenal diet. I figured I had about a month and a half to eat however much and whatever I wanted and to drink whenever possible. This equaled roughly 12 pounds in almost two months. I'm probably 5 pounds away from having that really loud breathing that Tony Soprano has when he's talking or even just thinking. THEN I go to the doctor and he says I'm probably not going to go on Chemo right away and that I really need to get in shape. When I told him my original plan, he begged me to stop. I may request Chemo, or find a guy in the South Bronx willing to sell me some, just for the ease of things. If Anna Nicole Smith was still alive, I'd love to see the TrimSpa diet commercial with her in it but saying, "It's Chemo Baby!". Oh well, I'm going to go eat my bean sprout and cottage cheese sandwich.

To Get Up To Speed

Just to catch everyone up to date and what got me to this point I'll give a quick summary. Sorry if it's a little long and boring. The rest of the entries will be much shorter and I'll try and make them much more entertaining.....About two months ago I went to my doctor to check out some swollen lymph nodes I had and a little fatigue I was feeling. He did some blood work and after it came back negative for an infection he had me go get a CAT Scan. Most doctors would have just said I was fine, come back in 6 months, but this shows how important it is to have a smart, thorough family doctor that you can trust. The CAT Scan came back showing swollen glands all over my head and neck. Next step was a PET Scan and Biopsy. A PET Scan shows where there's any "activity" in your body. This could be merely an infection or it could be cancer. My entire lymphatic system lit up with activity and my spleen was enlarged, still not proof of lymphoma, but it was starting to look like it. Next was the biopsy where they took a lymph node from my groin. The biopsy came back negative for cancer. Great news!!! Then an Oncologist took some blood and those results came back positive for Follicular Non-Hodgkins Lymphoma. Crap. I sent all that info over to Sloan-Kettering (The #2 Cancer Center in the US) and they called back and said it's probably not Lymphoma. Great News!!! Then I got a secondary report back from the biopsy which said they actually did find Follicular Lymphoma present in the biopsy. Crap. I get an appointment at Sloan with pretty much the world's leading Lymphoma Specialist, Dr. Zelenetz. They said their results came back inconclusive, all the information they've gotten so far is kind of useless, and they'd have to get their own biopsy and also a bone marrow biopsy. I'll do a separate blog on what a bone marrow biopsy is like. Those results just came back Tuesday and were positive for Marginal Zone Lymphoma. It's a Lymphoma that's very very similar to the one they originally thought I had but there will only be a few hundred people in my age, gender demographic that will get Marginal Zone Lymphoma this year, so it's very rare. I'll be getting another biopsy on Monday which will hopefully give them all the info they need and they said there's a chance I may need to have my spleen removed because it's so enlarged and would give them much more information. October 4th will be when I find out all results and whether or not I'm going on Chemo. That should catch everyone up to date. Some important things that I learned so far: 1) Have a great family doctor 2) Get all surgeries done at the best possible hospital, even if it means waiting a few more weeks. 3) Get the best possible care from the smartest people. They told me at Sloan that 18% of cases they receive are misdiagnosed. That means 1 out of 5 people they see either think they have cancer and don't or think they don't have cancer and do. Crazy. Sorry this was boring......

Introduction

So this is my first ever blog and even though I'd rather it be about traveling with LSU tailgates, me having cancer will have to do for now. There are a few reasons for this blog/diary. First, is so I don't have to call up everyone individually when new news comes along. It will also serve as a reminder for myself in the future to look back and see when new news came along and what that news was. But the core purpose, is so that if anyone else that any of you know ever gets Lymphoma, they can have an precise idea of exactly what to expect and not have to base it on on-line articles that may have no credibility at all. I have no clue how often I'll post, probably after every check-up (every few months) and more often whenever chemo starts. I really hope it never seems like I'm feeling sorry for myself, because I don't, or that it's a bunch of complaining...that's the last thing I want this to be about. If it's ever descriptive in a bad way, it's just so that people that get diagnosed with Lymphoma will know exactly what it's like, no bullshit. And Oprah keeps a journal so I probably should too. There will also be posts if there's ever any sort of event that Memorial Sloan-Kettering Hospital or the Leukemia & Lymphoma Society are putting on. I hope you enjoy this blog and there will be a few updates to get everyone up to speed in the next few days. And PLEASE don't get offended if I ever make light of my cancer, I'd never make light of what anyone else has gone through or may have to go through, but making jokes about it helps me greatly... that's probably perverse and demented, but for some reason it helps. Lastly, thanks for all the "Good Lucks" from everyone, it definitely means a lot and helps when you have people around that care about you.