Lymphomania: Treatment 2 Is Through

Well, two down, six to go. So far this one hasn't been too bad. I've been chillin' at my folks' place, so maybe it's the home cooking. :) The infusion took about an hour less than I thought it would, which I guess is a good sign. I asked the doc if it's normal for the tumor to swell during treatment, and he said it was; so far I haven't seen it happen this time, though, but it didn't happen immediately last time. I'm not too concerned about that, though. As long as it's not a bad sign, I'm good with it. One cool thing is that I can barely feel the tumor in my neck. Honestly, if I didn't know that it was there and exactly where to feel, I wouldn't notice anything out of the ordinary.

On the subject of hair, I now have none on my head except eyebrows. The day after Christmas (still at the parents' place), I went outside on the porch before taking a shower to brush off as much loose hair as I could to keep from clogging the drain. After a while, I just got tired of brushing. I came in and looked in the mirror and saw that I'd actually rubbed a bald spot on my head, so I figured it was time to take it all off. A day or so later, the beard started coming out, so now that's shaved, too. Hopefully the eyebrows will stay. :)

Lymphomania: Crazy Cancer Christmas

First, I hope everyone out there had a great Christmas! It's the day after Christmas here, and it ended up snowing enough to have over an inch of accumulation for the first time since 1882. I don't really count it as a white Christmas, though, since it snowed at night after it was already dark. Still, it's pretty insane to see this stuff at this time of year.

But I can't sit around talking about the weather all day. In my last post, I mentioned that the size of my tumors hadn't really decreased visibly. That is no longer the case. Right now, the tumor in my neck is no longer visible (very cool!), although I can still feel it with my fingers, and the one on my chest looks a little smaller. Looking back, the size changes were a little weird. After the first couple of days, I thought I noticed a size decrease, but over the next several days, both tumors seemed to swell back up to at least their original size, and my shoulder started hurting again, which concerned me. Over the next few days, however, it went down to below the original size, and the shoulder pain dulled to almost nothing. Seems odd, and it'll be something to ask the doc about in a couple of days when I go in for treatment #2 (or as my sister calls it, "plug-n-chug"), but I guess as long as the end result is that the tumor is shrinking, I don't really care how it gets there!

The other thing to report is: I have now started shedding. Last Tuesday I finally got around to getting a haircut. Why would I get a haircut if my hair could start falling out? Well, if you had ever seen it all bushed out and sticking up all over the place, you would understand why I couldn't just let it go while waiting for it to start disappearing. Anyway, the very next day I started seeing a few hairs here and there, like on my desk at work. By that night, I could hang my head over the sink and start rubbing my head, and LOTS of little hairs would shower down. When I took a shower the next day and opened my eyes after rinsing my hair, my shoulders and arms were covered with hairs from my head, and water had actually started backing up in the drain! I used a plunger on the drain, and clumps of hair came up. Keep in mind the length of the hairs, so that'll give you an idea of the number of hairs that had to come out. Also, I can pull the hair on a random place on my head and come away with a tuft of hairs in my fingers. It doesn't hurt, as they are already pretty much detached, and there are no roots on the ends. Right now my hair is visibly thinner, and I'm assuming it will only get more so, so by the time you see me next, I may have already shaved it all off. Luckily, a couple of ladies have already said I'd look good bald, which, lets face it, is the primary thing guys worry about, so no worries! :-)

Lymphomania: Staging and Checkup

So Thursday I went to the doc for a post-treatment checkup. It was pretty uneventful and mostly consisted of me giving the doc info about what side effects I'd had. They drew blood to check my counts and make sure they weren't too low; some were still below normal, but not to the point of concern, and they should continue to recover until my next treatment, at which point they will test again. I did receive two pieces of information that were noteworthy to me, though. First, to refresh, as I mentioned in my last post, I had not seen a visible decrease in the tumor, even though the doc had said that it could react fast enough to visibly shrink within one to two days. I asked if that should be cause for concern, and the answer was no, which set me at ease some. Second, I got the bone marrow results back, and they came back normal! When the PET scan results came back and set the cancer at Stage 2, that was kind of pending the results of marrow biopsy. That the marrow is normal means the stage gets to stay at 2 instead of going higher, which is awesome!

And speaking of PET scan results, I thought I'd give you all a little treat. I got copies of the actual images, so you all get to see a picture of my insides where the tumors are!




There were lots of images, but these were two that I thought most representative of the situation. PET scans work by first injecting radioactive glucose (sugar) into the blood. Most of your body gets rid of it relatively quickly, but tumor cells process it slower, so if we take pictures of where the radiation is coming from, we can see where the tumor cells are. The first image shows a slice of my body going long-ways from my head down to about the middle of my stomach. Of most obvious note is the large glowing mass in my upper chest. (Does this remind anyone else of ET?) Everyone, meet my tumor ... tumor, meet everyone. You can see how it creeps up into the lymph node on the left side of my neck, and also visible is a tumor under my right arm. Additionally, although not shown in this particular picture, there are tumor cells in the lymph node on the right side of my neck.

If you look at the second picture, you'll see a slice going down through my body at the top of the chest. This shows the depth of the main tumor; you can see it wrapped around the breast bone at the top and protruding fully half-way down through my body. You can also see the one under my right arm on the left side of the image, giving a frame of reference for exactly where the slice was taken if you compare with where that smaller tumor is in the top image. So now you've seen my tumors... impressive indeed! I'd always heard the dimensions of tumors in other people and wondered how they could fit, and now I find myself wondering the same thing of the tumor inside me. I mean... isn't all that space pretty much spoken for? I just don't see how you can fit that inside and not cause serious problems. Bodies are weird. The most important thing that these images show is that there is nothing below the diaphragm; that would have bumped it up to Stage 3. Even though it's big and spread to a couple other areas, it's still localized only to the top part of my body, which is a great thing.

You'll probably also notice a couple of other areas that are lit up in the top image -- mainly the heart and brain. Those are not due to cancerous cells, but are just place where the radioactive glucose is still hanging around. In the brain's case, it's because of how the brain uses sugar; the doctor said that because of this, you can't use PET scans to image brain tumors. I'm not sure why it hangs around the heart, though. And while they're not shown here, other images have the kidneys and bladder lit up since the kidneys are the ones filtering the glucose and then sending it to the bladder. (Neat!)

It still blows my mind that we are able to do this -- to make these images. Without one cut or invasive procedure, we have pictures of all the tumors in my body. When I first got them a week and a half or so ago, I thought they were fascinating (I still do) and wanted to post them pretty quickly. I spent a lot of time going back and forth through them, looking at the different slices and views of my body; there's also a series of CT scan slices (they use the CT data to help build the final images) to look at. However, later in the day, it was like a switch flipped... I guess when the novelty wore off, it really hit me as to what I was looking at, and I suddenly didn't want to see any more. That's pretty much worn off now as well, but it was an unexpected reaction and the reason why I drug my feet putting them up. But they're up now -- for everyone's viewing pleasure. Until next time. Peace.

Lymphomania: Treatment 1 is Done

So last Monday I started Treatment #1. All of the treatments after this will be done on a single day, but for this one, they split it up into two. If I'm not mistaken, this was to first make sure I didn't have a bad reaction to the Rituxan I got on day 1. Since a reaction was possible, my mom was there in case I couldn't drive afterward. Fortunately, there were no adverse reactions from the drug. Usual infusion time is 4-6 hours for this stuff, and they said I'd probably take the whole six hours the first time, then the day of, they said they'd probably take five hours. However, since they never had to slow the infusion rate, I got done in four (nice!). As an aside, my mom being there also gave one of the nurses the opportunity to inform my mom that she wanted to set her (the nurse's) daughter up with me.

Since I was going to be back in the next day, they just left the needle "plugged into" my port overnight, so I got to go around with a little tube coming out from behind a dressing on my collar.

The next day was only an hour and a half's worth of infusion time, so I was only there until lunch. This was good because I wasn't there for very long, but bad because I had enough time to go to work after that. The side effects were thankfully minor for this round. I had about three days of my stomach feeling "not quite right", but I wouldn't say it went so far as nausea. The second through fourth days after, my energy level was really low, but that just means more excuses to take a nap. :D My esophagus/larynx area was a little sore when I'd swallow liquid, but again, mostly just enough to be annoying. Finally, my taste changed some. Sweet stuff tasted really muted, and ... you know that feeling you get in your jaw when you first put something really tangy in your mouth? I get that with a lot of non-tangy foods.

It's now five days after treatment, and I'm feeling pretty much back to normal. I will say that I can't really tell a difference in the tumors in my neck and chest, which is honestly a little distressing since it was supposed to react pretty fast, and the doc said it was possible that a visible difference would be noticeable in one or two days. Now, I can't really draw any conclusions from this since I don't know how these things react, and it's very possible that this is normal. Still... it's noteworthy to me. Next appointment is Thursday. We'll see what he says.

Lymphomania: Self-Preservation

I almost wasn't going to write about this, but there were a couple of funny things that I just had to share... One of the side effects of the chemo is a small (about 20%) chance of infertility (that's not the funny part; I'm just introducing), so the doctors point out that if you ever want to have kids, it may behoove you to put some of your boys on ice for later. Now, this was kind of a weird thought for me, but given the fact that a pretty major door could shut forever after this, and after hearing about a friend of a friend who ended up as one of those statistics but was still able to have a kid because he stored, I decided the prudent thing to do would be to get over it and make a deposit.

First funny thing: when I get there and enter the waiting area, this is the piece of art I see hanging on the wall.


I mean... really? I asked one of the women there if that was supposed to be what I think it was supposed to be, and I think it's only supposed to be a representation of cells in general, but she agreed with me what specific type they look like.

The second funny thing arises from the fact that this place accepts anonymous donations. I noticed that on Friday afternoon there is a steady stream of college students coming in to get their weekend beer money. What really got me, though, is that you could tell these people were regulars, because they walk right in, know the receptionist by name, and just start chatting it up. And this isn't just being friendly; the woman I was talking to in an office heard on of the guys and knew that he worked at a Chick-fil-A! (I'll let you try to guess which one. ;) ) These people knew each other! I mean... I knew that college kids did that from time to time, but I never thought of it as a regular source of income.

Finally, the process of anonymous donation is a little more streamlined than what I was there for, and the final step involves punching some stuff into a computer in the waiting area. I snapped this picture of the computer.

If you can't make it out, the sign says, "STOP. PLEASE USE HAND SANITIZER BEFORE TOUCHING THE KEYBOARD." There are sooo many comments that pop into my head from this, but out of a rare sense of common decency, I think I'll just let the image speak for itself.

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!