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!!!