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...