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.