Lymphomania: Who's Got Two Thumbs and Cancer? THIS Guy!!
OK, I'll admit -- that's a cheesy opening, and you may not get it if you've never watched The Office, but trust me -- it's funny, and somehow it just seemed right. I've decided to start a new series of posts because I was recently diagnosed with lymphoma. I decided to name the series "Lymphomania" because adding "mania" to the end of anything makes it sound cool and extreme. I kind of went back and forth on whether or not to write all this out, but in the end decided to go for it because: 1) it could give me a way to answer any common questions, 2) it'll be a way for people to keep up with me without me spamming everyone I know all the time, and 3) writing stuff can help me get it out of my head. Also, funny and/or interesting stuff might happen, and this way I can share it with everyone.
This first post might be a bit longer than usual because I'm trying to play catch-up. The first part will be answering the common question I get, "How did I find out?", and the second part will be a (hopefully brief) synopsis of events so far. General thoughts and what I've started to learn will come a little later.
The Road To Diagnosis
So how did I find out? It started in the summer. I began feeling a lot of sharp pain in my chest around my sternum -- specifically if felt like it was in the connective tissue between the sternum and the ribs. It wasn't really a muscle thing. After some Googling, I found out about a condition called costochondritis, which seemed to explain my symptoms exactly, but it's benign and usually goes away by itself and can last several weeks, so I didn't worry about it. After several weeks, the pain had indeed begun to fade, but it moved up into my shoulders. At this point, I was thinking that it may be an infection of some sort that maybe attacks the cartilage, but as the chest pain was fading, I figured the shoulder pain would as well. Eventually, it did indeed begin to fade, almost to nothing. Almost. It was also at this time that I noticed a swollen lymph node, but I didn't think much of it since -- hey -- that's what lymph nodes do when you have an infection. I also noticed that there was a prominence on my chest where my collar bones come together. You can see it easily if you're looking for it, but if you're not, it was subtle. I wondered if the infection had built up scar tissue or something. Point is, I could always rationalize it away into something not-too-bad. Eventually, though, I had to concede that even though the pain was very faint, it was still there and didn't seem to be getting any better, so at that point I decided to go get a physical, which I'd been saying for years that I needed to do.
The doc pretty much gave me a clean bill of health as far as he could tell except for the lymph node and chest prominence, so he ordered an x-ray and referred me to a surgeon to look into it more. The surgeon was concerned about the lymph node and said the x-ray showed a mass in my chest, but it was in an unusual spot, so he took a needle biopsy of the lymph node that day and ordered a CT scan of my chest and neck. The biopsy came back benign (we can only assume now that the sample was too small or something), but they wanted a CT-guided biopsy of the chest mass. Those results came back as a lymphoma, at which point I was sent to an oncologist. The specific type is a diffuse large B-cell lymphoma situated primarily in a tumor that started behind my breast bone and then wrapped around to the front. Dimensions are 12.5 x 10 x 7 cm. It has also spread to the lymph nodes in my neck.
Treatment
Treatment is going to be chemo and probably some follow-up radiation. The chemo regiment is called R-CHOP, which is an acronym for the drugs used. (Fun fact: The 'R' stands for Rituxan, which is not actually a chemo drug, but a chimeric protein, part of which is of mouse origin.) The drugs will be administered the first day of 8 21-day cycles. The drugs start to work very fast, and a visible difference in tumor size can usually be observed within the first couple of days. In the case of the Rituxan, part of the possible side effects that may occur during infusion actually arise from your body not being able to get rid of the dead tissue fast enough, and so they may have to slow the infusion speed.
After the chemo, I'll probably have radiation to the chest to help kill off anything remaining.
Since Diagnosis
I was at the oncologist the Wednesday before Thanksgiving, and that's when he laid out the specific type of lymphoma and the treatment. This week has pretty much been a whirlwind of prep work. Monday I had an echo cardiogram -- basically an ultrasound of my heart. This was to help assess my heart's current strength (kind of a "before" picture), as chemo can weaken it, so this was a baseline. It was actually pretty cool -- I could see valves opening and closing and such. It was much clearer than those bogus ultrasound images expectant parents show you when they try to convince you there's a baby somewhere in all that static.
Tuesday was a PET/CT scan. Basically they shoot you up with radioactive sugar water which hangs around in tumor cells so they can then get a picture of where all the bad stuff is. The nurse brought it in in a syringe that was setting inside a thick, hollow, metal tube. I asked if the tube was made of lead, and she said that stuff could go through lead, and that the metal was tungsten. She then proceeded to inject it into my body and inform me that she couldn't be around me anymore. This has not yet resulted in super powers, but every day I try to move things with my mind ... one can only hope... After 45 minutes in a "quiet room" where I just had to sit while it worked its way through and out of all the good cells, they sent me through two big doughnuts for about 15 minutes to take pictures. (I was actually in there a good bit longer, because a couple of minutes after they started the first run, they had to take me out and basically reboot the machine, which took about as long as the scan. Running Windows, anyone?) Luckily, when I got the results back, it only showed tumors where we already knew about them (chest and neck), so pending the bone marrow biopsy, it should just be at stage 2.
Wednesday, I had an IV port implanted under the skin just under my right collar bone. For this procedure, I had to go into gremlin-mode, meaning that I was not allowed to eat or drink anything after midnight the night before. I got through it pretty well with the help of a nifty drug called Versed. This stuff is cool -- it doesn't necessarily put you to sleep (although it might), but you're very relaxed, and you don't remember what happened. They had to shave the top part of my chest, but they did it all slanted -- they couldn't even make it symmetrical. Oh well... at least I'm not a man-o-lantern. Also, I had this orange stuff all over my neck and chest that made it look like someone had attempted a spray-on tan and failed miserably.
Thursday (today) was the bone marrow biopsy. Not too much to say about that except that it's a literal pain in the butt. I got more Versed, so I don't remember the procedure aside from some pressure on my hip just to the left of my tail bone, but I was evidently at least partially conscious, as I was told that when they mentioned something about putting soap on the area, I asked if it was orange.
Well, it's pretty late now, and I think this is enough for the time being, so no snazzy conclusions. I think I'll just say cut it off here and say, "To be continued..."
'Night everybody!
This first post might be a bit longer than usual because I'm trying to play catch-up. The first part will be answering the common question I get, "How did I find out?", and the second part will be a (hopefully brief) synopsis of events so far. General thoughts and what I've started to learn will come a little later.
The Road To Diagnosis
So how did I find out? It started in the summer. I began feeling a lot of sharp pain in my chest around my sternum -- specifically if felt like it was in the connective tissue between the sternum and the ribs. It wasn't really a muscle thing. After some Googling, I found out about a condition called costochondritis, which seemed to explain my symptoms exactly, but it's benign and usually goes away by itself and can last several weeks, so I didn't worry about it. After several weeks, the pain had indeed begun to fade, but it moved up into my shoulders. At this point, I was thinking that it may be an infection of some sort that maybe attacks the cartilage, but as the chest pain was fading, I figured the shoulder pain would as well. Eventually, it did indeed begin to fade, almost to nothing. Almost. It was also at this time that I noticed a swollen lymph node, but I didn't think much of it since -- hey -- that's what lymph nodes do when you have an infection. I also noticed that there was a prominence on my chest where my collar bones come together. You can see it easily if you're looking for it, but if you're not, it was subtle. I wondered if the infection had built up scar tissue or something. Point is, I could always rationalize it away into something not-too-bad. Eventually, though, I had to concede that even though the pain was very faint, it was still there and didn't seem to be getting any better, so at that point I decided to go get a physical, which I'd been saying for years that I needed to do.
The doc pretty much gave me a clean bill of health as far as he could tell except for the lymph node and chest prominence, so he ordered an x-ray and referred me to a surgeon to look into it more. The surgeon was concerned about the lymph node and said the x-ray showed a mass in my chest, but it was in an unusual spot, so he took a needle biopsy of the lymph node that day and ordered a CT scan of my chest and neck. The biopsy came back benign (we can only assume now that the sample was too small or something), but they wanted a CT-guided biopsy of the chest mass. Those results came back as a lymphoma, at which point I was sent to an oncologist. The specific type is a diffuse large B-cell lymphoma situated primarily in a tumor that started behind my breast bone and then wrapped around to the front. Dimensions are 12.5 x 10 x 7 cm. It has also spread to the lymph nodes in my neck.
Treatment
Treatment is going to be chemo and probably some follow-up radiation. The chemo regiment is called R-CHOP, which is an acronym for the drugs used. (Fun fact: The 'R' stands for Rituxan, which is not actually a chemo drug, but a chimeric protein, part of which is of mouse origin.) The drugs will be administered the first day of 8 21-day cycles. The drugs start to work very fast, and a visible difference in tumor size can usually be observed within the first couple of days. In the case of the Rituxan, part of the possible side effects that may occur during infusion actually arise from your body not being able to get rid of the dead tissue fast enough, and so they may have to slow the infusion speed.
After the chemo, I'll probably have radiation to the chest to help kill off anything remaining.
Since Diagnosis
I was at the oncologist the Wednesday before Thanksgiving, and that's when he laid out the specific type of lymphoma and the treatment. This week has pretty much been a whirlwind of prep work. Monday I had an echo cardiogram -- basically an ultrasound of my heart. This was to help assess my heart's current strength (kind of a "before" picture), as chemo can weaken it, so this was a baseline. It was actually pretty cool -- I could see valves opening and closing and such. It was much clearer than those bogus ultrasound images expectant parents show you when they try to convince you there's a baby somewhere in all that static.
Tuesday was a PET/CT scan. Basically they shoot you up with radioactive sugar water which hangs around in tumor cells so they can then get a picture of where all the bad stuff is. The nurse brought it in in a syringe that was setting inside a thick, hollow, metal tube. I asked if the tube was made of lead, and she said that stuff could go through lead, and that the metal was tungsten. She then proceeded to inject it into my body and inform me that she couldn't be around me anymore. This has not yet resulted in super powers, but every day I try to move things with my mind ... one can only hope... After 45 minutes in a "quiet room" where I just had to sit while it worked its way through and out of all the good cells, they sent me through two big doughnuts for about 15 minutes to take pictures. (I was actually in there a good bit longer, because a couple of minutes after they started the first run, they had to take me out and basically reboot the machine, which took about as long as the scan. Running Windows, anyone?) Luckily, when I got the results back, it only showed tumors where we already knew about them (chest and neck), so pending the bone marrow biopsy, it should just be at stage 2.
Wednesday, I had an IV port implanted under the skin just under my right collar bone. For this procedure, I had to go into gremlin-mode, meaning that I was not allowed to eat or drink anything after midnight the night before. I got through it pretty well with the help of a nifty drug called Versed. This stuff is cool -- it doesn't necessarily put you to sleep (although it might), but you're very relaxed, and you don't remember what happened. They had to shave the top part of my chest, but they did it all slanted -- they couldn't even make it symmetrical. Oh well... at least I'm not a man-o-lantern. Also, I had this orange stuff all over my neck and chest that made it look like someone had attempted a spray-on tan and failed miserably.
Thursday (today) was the bone marrow biopsy. Not too much to say about that except that it's a literal pain in the butt. I got more Versed, so I don't remember the procedure aside from some pressure on my hip just to the left of my tail bone, but I was evidently at least partially conscious, as I was told that when they mentioned something about putting soap on the area, I asked if it was orange.
Well, it's pretty late now, and I think this is enough for the time being, so no snazzy conclusions. I think I'll just say cut it off here and say, "To be continued..."
'Night everybody!
Labels: lymphomania
posted by jblee at 9:04 PM
3 Comments:
And what did we learn???
1) Don't try to diagnose yourself with Google.
2) Men really are way too stubborn about going to the doctor.
And good luck acquiring those super powers. I just hope its not xray vision that you get. That could be scary.
-Mandy
You're hilarious.
Blee ... thanks for the updates. I'm making you do 3 minutes of stand-up when treatment is over so keep writing.
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