Lymphomania: The (Hopefully) Last Entry

Well, I've been saying for a while now that I need to finish this series. As I mentioned before, there are some things that, if you don't have to think about anymore, you just don't want to, but I figure this story needs a cap. I hope this is a cap, anyway.

My last post was on August 30, 2011. That was almost eight months ago. It doesn't seem like that long... In that post, I gave the news that the doc said he thought I was fine. He didn't deem me "in remission" at the time since the inflammation from the radiation had kept him from making that determination. Three months later, I had another PET scan, which showed a decrease in tumor size as the inflammation had decreased, and he said that if the next PET scan (to take place in another three months) was good, then I could get the IV port removed. Three months later, in February, I got that scan. The most notable statement was the last one of his summary: "No new areas of abnormal tracer uptake identified to suggest a recurrent disease or new disease." The tumor of scar tissue that was left measured 3.63 x 1.76 cm. I went from something the size of a Coke can in my chest to a lump just a bit longer and skinnier than the outer joint of my thumb. Simply insane... So on March 16, 2012, roughly one year and four months after the initial diagnosis, the IV port came out.

So now there is a good possibility that, aside from some tests, I'm done. I'll have another PET scan in June, at which point I would have been in remission for about a year, and right now I'll have them at four month intervals. For how long I'll stay at that interval and for how long they'll be PET as opposed to CT scans (the doc said early on that at some point I'd switch over to CT) I do not know. Right now, I'm just keeping my eye on that five year mark. As long as the June test goes well, I'll have four more to go.

A lot can happen in a year and a half. Part of it actually seems a little unreal to me now. I had cancer. Cancer. I had something that was going to kill me. Part of me feels like it's trying to forget that it ever happened -- that part that eventually grows accustomed to whatever comes, that starts to take everything, no matter how big, for granted given enough time, and I'm both fascinated and horrified that that can happen. At the very least, I will always have the scar on my shoulder as a reminder. I can kind of understand why people get tattoos to commemorate events. Heh -- and I guess I kind of have that, too. I'll always have the dots they tattooed on my body for the radiation treatments. So that's two physical reminders. I hope I never forget or take life for granted.

And you never should, either. You do not have as much time as you think, and whatever semblance of control you think you have in life is an illusion. Anything could happen at any time. I will tell you this: things don't bother me quite as much as they used to, and I'm not as fearful as I used to be. Whatever comes along, whatever bad thing pops up, in the vast majority of cases, it will go away. If tomorrow you were to total your car or lose your job, that problem would eventually go away. Bad things have happened and will continue to happen; that is the nature of things. And when they do, you will come through the other side. It's not the end of the world. Just keep breathing, have faith in God, and keep taking the next step.

Lymphomania: Relief

Doc: How are you doing?
Me: I'll let you know in a few minutes.
Doc: I think you're fine.

And with those statements, the coin lands heads up. Mark Twain once said that the difference between the right word and the almost right word is the difference between lightning and a lightning bug. I can't think of the right words right now, so I'm not going to try for any exposition in this one.

My hematology oncologist (the one in charge of chemo and such) said that he talked about the PET/CT results with the radiation oncologist (guess what he's in charge of), and while there was some inflammation, it was all pretty much exactly in the radiation's field, so that was to be expected, but there was no new activity or growth. Before officially labeling me “in remission”, I'll be going back for another PET scan in three months after the radiation's effects have subsided a bit more, but he thinks I'm fine.

I'll be able to enjoy the fall and hopefully hike some. On the down side, I don't have an excuse to get out of traveling for work anymore. :)

Thank God, and thank you all for your prayers and support.

Please, enjoy life.

Lymphomania: Reliance

So right now it's Sunday night, and I'm a day and a night away from getting the results of last Monday's PET scan, which should tell whether or not I am in remission. A week and a day is a while to wait for something like this, but it does have its advantages. I remember when I was getting the staging done; you'll recall that it had two components: the PET scan and the bone marrow biopsy. The scan results were back first, and as I got those, I knew that the staging was contingent on the marrow results coming back clean. It would be several days later before I was back to the doctor's office, and I could have called for the marrow results before that, but I decided that it wouldn't matter. At best, the stage would remain as-is, and at worst … well, it would be worse. So I figured I'd assume the best for a few more days, since knowing sooner in this case would do absolutely nothing for me. That's kind of like how it is now. Getting the results a few days sooner or later won't make a difference health-wise, so as long as I'm not freaking out right now, it's good to have a few more days of guaranteed normality. The trick is that whole “not freaking out right now” thing.

There's a subject I've been wanting to write about for a while, but I never got around to it. Simply put, I want to talk about the the role God has played in all this for me. People these days are so hesitant to speak of such things publicly, and I'm not really sure why, even though I am one of them. It's a personal matter, but one should never mistake “personal” for “private”. Your favorite flavor of ice cream is personal, but that doesn't stop you from adamantly discussing it. For Christians, faith was never meant to be private. “No one lights a lamp and puts it in a place where it will be hidden, or under a bowl. Instead they put it on its stand, so that those who come in may see the light.” We are also told, “Always be prepared to give an answer to everyone who asks you to give the reason for the hope that you have.” People always tell me how well I've handled this whole process. Well, here's my small attempt to shine a little light on the reason for my hope.

I mentioned in an earlier post that when I was first diagnosed, I thought about how much we think we're owed. It would be extremely understandable, when getting news of a possibly terminal illness, to believe you're getting robbed of something, as if you're owed something in the first place. While understandable, I believe this attitude is inherently dangerous. To go around believing that something has been stolen from you simply gives rise to anger without any positive benefits. What kept me from falling into that line of thinking was a parable that Jesus told that popped into my head while I was initially getting poked and prodded. In the parable, Jesus tells of workers who are not employed for the day. A landowner goes out in the morning and hires some to work in his field in exchange for a certain amount of pay. Throughout the day, the landowner continues to hire workers. At the end of the day, all the workers are paid the amount that was agreed upon for the first workers. The workers that started earlier in the day are upset because the later ones got the same pay for doing less work, to which the landowner replies that they got what was agreed upon, and what is it to them if he wants to be generous to the others? When I thought about this parable, I had to admit that I was never promised anything, and if I am given a certain amount of life, who am I to get upset that I didn't have more or that others get more. I have already had more than some, and no matter when I die, I will have had less than someone else. Of what exactly am I being robbed? Did I have to be given anything at all? After you stop feeling that something's been taken from you, it's a lot harder to feel mad.

Another thing that really helped was to focus not on the negative aspects of the situation, but the blessings that God had given me. When something like this happens, one response is to rage against God for the bad He has put in your life, but I think that's taking a very narrow view. When I looked at how I was entering into the situation, what I saw was how stacked in my favor the circumstances were. Other than the cancer, I was healthy. I wasn't too old to handle the treatment well, and I wasn't a young child that didn't understand how filling my body with poison was going to hopefully make me better in the end. I wasn't a young child who was only going to get a few short years at life if the treatments didn't work. I had a great job that allowed me the time needed to get treatments and insurance to pay for it. I had a good place of treatment that was just a few minutes from home and work. The cancer hadn't spread throughout my entire body. I didn't have one of those cancers where you only get 3-6 months after diagnosis with almost no chance of recovery; instead, if you look at the raw numbers, they were actually in my favor – more patients survive than not. I had family and a great network of friends close by. I got cancer and things could have been so much worse. I thank God for all that He has given me.

Finally, there was the actual possibility of a death that would come sooner rather than later. I have tried to keep a good balance of optimism and realism, so while I do not dwell on the worst, I must acknowledge that it is a possibility. To help me there, I recalled a comment that a friend of mine once said. A couple of friends and I had been hiking about three years ago, and somehow we got on the subject of dying while still relatively young. The only thing I remember from that conversation was my friend's attitude about it. “I wouldn't care. It just means I get to go home sooner.” I liked that. A couple of years before that, my uncle had asked if I knew how to get to Heaven. I squirmed a bit, but my answer was basically to follow the Ten Commandments and hope that in the end you were good enough. I have since learned that that is not right, though. You can never, ever be saved by merit. For a Christian, the answer is by accepting Christ as your savior. You rely not on hope that your actions are good enough (because they never will be), but on faith that your debt to God was paid by Jesus, and with that, you do not need to guess or fear. I was (and am) confident of where I will end up, be it sooner or later, so when it inevitably does happen, I will simply be going home. It's really not so much “death” as “moving”. The process may be none too pleasant, but that is temporary. I will not say that I haven't had my moments of fear here and there, and I of course have a preference of how I hope it turns out, but in the immortal words of Obi-Wan Kenobi, “If you strike me down, I shall become more powerful than you could possibly imagine.” So we needn't really worry about that too much. ;)

So after all that rambling, we come back to where I am now – waiting while a coin flips over and over in the air to see on which side it will land. OK, it's really more like a six or eight sided die with two bad sides, you you get the picture. It's starting to get a little weird knowing that in a bit over a day I'll get news and either be done for a while or have to do more chemo. The up side is that right now I'm not going to get any “you're SOL” news – I think the worst that it could be at this point is more treatment, which I'll handle. Still, it's been weird to, for the first time, really know that I am ultimately powerless. I can take the drugs and keep a good attitude, but it's not in my hands. Fortunately, the one in whose hands the outcome does reside are not only powerful, but good. That has a comforting feel. When Daniel's three friends were about to be thrown into the furnace by Nebuchadnezzar, they told him how God could save them, but (and this is extremely important) then continued, “But even if he does not...” We do not know God's will, and that leaves open the possibility that things will not go as we would wish. However, that is no reason to hold anything against Him. If we believe that He is who He says He is, then we must trust how things turn out. In the end, we must realize that we don't know as much as we think we do, and we are not as powerful as we think we are, and we cannot control the world as much as we try to. But it's good that someone is there on whom you can rely, and if you trust in that, then even though the world may not be peaceful, your heart still can be.

Lymphomania: Fun With Particle Accelerators

When we last left our intrepid hero, he had just finished chemotherapy! And now – the next exciting installment!

Shortly after my last chemo treatment, I was sent to a radiation oncologist, who is basically another cancer doctor that specializes in radiation treatments. My first appointment was for a consultation. They put in all my medical history (that I'd given to other doctors before... not sure why all that stuff isn't linked together...), and then I had a long talk with the doc where he explained all about the process. Now, this guy is as big of a nerd as I am, so at the end, he told me that he went into a lot more detail with me than he usually does, but he figured I'd appreciate it, which was a correct judgment. :) [an aside: Does anyone else think that “judgment” should have an “e” between the “g” and “m”? Either that, or “judge” should not have an “e” at all. In fact, it should be spelled “judj”. No need for all this “soft 'g'” business!]

So to pass along one of the more interesting pieces of information, he told me how the radiation actually kills the cancer cells. X-rays of a certain frequency are shot through your body. At lower frequencies, your body is transparent to them, but bone is not, which is why you can get x-ray images of bone and internal structure. If we increase the frequency of the x-rays (which is synonymous with increasing the energy when we talk about radiation), bone becomes transparent as well. The rays end up interacting with particles in your cells in ways that can break the cells' DNA. Now, your DNA is rather resilient, and it can normally repair itself, but if the cell is in the process of dividing, then the DNA, which is normally in the structure of a ladder, is in an “unzipped” state (picture halving a ladder by breaking all the steps on it), and breaks while it is in this state cannot be repaired. If the DNA can't be repaired, the cell dies. So basically, the radiation has a higher probability of killing cells that are dividing, and since cancer cells divide at a higher rate, they have a higher probability of being in that vulnerable state. You actually use the high rate of division against it. Neat! That of course means that the radiation can still affect healthy cells that have a high division rate, but just not to the same extent, so it's just like chemo in that way.

With regard to my specific case, he went over the pros and cons of treatment, since I could actually opt not to have it. (My thinking there is that the docs know more about it than me, so if they suggest it, I'm doing it!) The radiation is there to clean up what the chemo didn't get. This isn't always the case since sometimes it's used to shrink tumors before surgery. He said that the particular location and the bulkiness when it was found both increase the risk of recurrence, so he was in favor of the treatment. I'll admit, it felt weird going over that stuff again, even though it wasn't anything that I hadn't heard before. I just had to keep telling myself that that increased risk he talked about was already taken into account when I got my original prognosis. Otherwise, you can start feeling pessimistic about it. He also mentioned that the radiation they used wasn't very good at causing cancer, and that usually when people get cancer from radiation, it's because radioactive sources themselves have collected inside the person for some reason, and those sources cause constant exposure. The chances that the radiation treatment I got would cause problems down the line were on the order of 1/1000 – 1/10,000, but seeing as how the probability that the cancer is not in remission now is 1/4 – 1/3, I'll take those odds. On the up side, lymphomas in general are one of the more responsive cancers to radiation, so instead of needing a higher intensity dose for a shorter duration, they could use a lower intensity dose for a longer duration. The dosage is measured in “gray” (Gy), and the usual dose is 1.8 – 2.0 Gy, but for lymphomas, they can get away with 1.6. The doc said that higher energies wouldn't really do anything extra, and it'd just be like shooting a guy with two bullets instead of one when the one would kill him just as dead. Side effects depend on where the treatment is targeted, but generally include some fatigue. Since my treatment was to the chest, the other main possible side effect would be irritation to the esophagus, since the esophageal lining (and gut in general) is made of rapidly dividing cells.

After the consultation, there was a planning session, although this wasn't for another couple of weeks. The planning required another PET/CT scan so the oncologist would know exactly what areas to target. I got the idea that radiation treatment is very much an art as well as a science; he said that after he got the images, it would take him a few days to decide exactly what the best course of action was. It turned out that the scans didn't show as much detail as they wanted, so I had to do another CT scan with contrast (where they put the dye in your blood to make things show up better), but that wasn't a big deal. The up side of getting the PET scan was an update on how the cancer was doing. The bottom line from the hematology oncologist was that he thought we were still “on track”. Even though there was still a little bit of above-average uptake and a newer spot on the sternum showing, the doc said that at this point the images are very open to interpretation, and some of it could be from the drug they give me to stimulate the marrow into replacing lost blood cells. He did say that the most important and telling thing at this point was that the tumor was still shrinking, so I'm just holding on to that “still on track”.

So when the radiation doc gets the images and decides what to do, they basically use the scans to build at 3D model of the inside of my body, and they write a program that tells the radiation source where and how long to shoot the beam. The rooms with the scanners and treatment machines all have lasers in the wall that shoot fans of laser light along three axises: across the front of my body, down the front of my body, and down the side. Marks are placed on me along those axises where the lasers land, and they are covered with tape to keep them from coming off (although they have to be redrawn every few days; I thought at first they were using some special ink, but the first time they were redrawn, I saw that it was just a Sharpie). Also, small dots are tattooed (yes, the permanent kind) on those marks just in case; I have three: one on the center of my chest, and two on either side of my body. They stopped putting ink marks where the tattoos were, but still required a mark lower down on the sternum. I kind of wish they'd just have put a dot there as well so I didn't have to worry about it coming off throughout the whole treatment. Now, every time I went in to get zapped, my body was aligned with those lasers, then they used x-rays to fine-tune the position of my body to match where the machine thought I should be. Then the machine could move its x-ray source around me and administer the radiation according to its internal model, which matched up with my actual body position on the table. A couple of times in the treatment room I saw a plastic mesh mold of someone's head and top of the torso which the patient would lie under. I asked if that was for someone being treated in the head, which is was; you really have to be in the same position every time.

My first day of actual radiation, I soooo wanted to take in a spider or a popcorn kernel and put it on my chest. Just in case. ;) [The popcorn kernel of course would have purely been a joke, as microwaves and x-rays are way far apart on the spectrum.] Everything after I actually started the radiation was pretty rote. I had to have twenty-seven treatments, where I'd get one every week day, so it took five weeks and two days. (Well, actually, five weeks and three days since I didn't get treated on the 4th of July since that was a holiday, so that one just got tacked on to the end.) Once a week I'd meet with the doc, and they'd get my weight, temperature, and blood pressure, ask how I was doing, and then look at my back and chest (the exposure areas) to make sure my skin wasn't getting all funky or anything. The radiation basically reddens the skin, akin to a mild sunburn, and then it fades to brown for a few weeks, like a tan. The actual treatment just took a few minutes. After I went into the room, I laid down on the table with “the machine” looming over me. They'd line me up with the lasers, leave, and then line me up with x-ray images, then do the actual exposure, which was about eight seconds from the front and back (maybe nine or ten on the front; I was having to just count in my head), so sixteen to eighteen seconds' worth in all. If nobody was ahead of me, I was in-and-out in ten or fifteen minutes. I started on June 6 and ended July 13. Not too bad at all.

The side effects for me were actually really mild. I had a little fatigue at first, but that faded, and around treatment ten, I could feel some sensitivity in my esophagus, like it was clenching up a little when I ate sometimes, but it never got any worse, for which I am very thankful.

So right now I'm just waiting. I have a follow-up with radiation doc on August 11, which will probably just be a routine, “How are you feeling? [Fine.] Any lingering side effects? [No.] OK, lets get your temperature, weight, and blood pressure,”-type thing. After that, I have a PET scan scheduled for August 22 with an appointment with the hematology doc on the 30th to get the actual results. I guess he just wants to let the suspense build. :) Until then, I'm just enjoying some time where I don't have to think about it and live normally for a while. If it's ini remission when I get checked again, awesome! If not, then it's back to different chemo treatments. We'll see.

There's a comic I read called XKCD. His fiance was diagnosed with breast cancer about a month before I got my news, so shortly after I was diagnosed, he started putting out the occasional cancer-related comic. I liked one of his more recent ones a lot because it has a really good answer to the, “Did the treatment work?” question [Short answer: don't know] and gives a good idea of the cancer treatment cycle. It's at http://xkcd.com/931/, and after you read it, you should hover the mouse pointer over the image. The one that's two before that (http://xkcd.com/933/) is also good.

Lymphomania: Playing Catch-Up

OK, so it's been a while. I know this. Sorry. :) When one first starts going through the whole "cancer" thing, it's pretty overwhelming. After a while, though, the novelty wears off, in more ways than one. Everything that's happening actually becomes routine; what was once unusual becomes day-to day. I guess the simplest way to put it is that things seems less news-worthy, so posts start to get more spread out. Second, usually those closest to me – family and friends – more or less know what's going on, they're going to get used to it, and as the shock wears off and they see I'm living more or less normally, I don't feel the need to inundate them with every little thing. So again, the urgency to post wanes. There's one other reason, as well. You start living in two worlds. In one, right after treatment, you're too tired to write or do much that requires much mental effort (more on that a little later). In the other, you're taking full advantage of not being in that first state. Playing games, getting caught up on work, dancing... anything that seems normal and doesn't require thoughts of the disease – not necessarily because those thoughts are depressing or bad, but just because those thoughts get so old, and any break is welcome. But when your dad calls and tells you that he went to the dentist, and the first thing they asked was when I was going to update the blog... well... how can I keep disappointing my adoring fans? ;) So I'll try to catch everyone up, even if it's in a somewhat disjoint manner, although it may take a couple of posts just to keep them at reasonable lengths. We'll see.

On May 3, I got my LAST chemo treatment of this (and hopefully only) series. I think that I was the most impatient through that one. You know how you can need to go to the bathroom badly for a while but not have the opportunity, and then right when you know you're about to be able to, the urgency suddenly increases? It's like when you know you're not going to need to hold it much longer, your body starts to let down its guard – it's all a mental thing. My last round of chemo, I knew that it was my last round; I knew I only had to take it for a few more days, and I think that I began to let my guard down mentally. Most of the six months I was OK because I had the attitude of, “This is my life right now. This is happening.” At the end, though, you start to think again about a life without it, and the contrast can begin to weigh on you. It was interesting to observer.

Another interesting thing to see was how a lack of energy affected my attitude. I found that in the latter half of treatment, I simply wasn't as cheerful in the days following infusion. It wasn't depression or melancholy or anything – just a very “meh” feeling. I discovered then that attitude does have a physiological component. Right after a treatment, I was just tired of the whole process; it had just gotten old, but by the third week – what I liked to call “normal week” – I was pretty much cheerfully ready for the docs to bring on the next treatment. I've heard about people dismissing treatment of depression and such with medication, implying that the person just needed to suck it up and snap out of it. That may be true in some cases, but I know now that yes, there can be a physiological basis for one's mood. The experience made me think about the idea that I believe most of us have that we have a consciousness that simply resides in our bodies, but we must remember that our bodies give rise to our consciousnesses. If the body gets messed up, it's going to affect the mind. The two are kinda linked.

On a totally different note: hair. My sister had told me that my hair may begin to come back before I was done with chemo, and that's what happened. When it first came out, I would not have been 100% bald without shaving; there were some hairs that hung on for dear life so that I had to periodically run a razor over my head and face. It gradually began to thicken to the point that right before my sixth treatment (if I remember correctly), I shaved it for the last time. After that I decided that it was thick enough to let go. There were a couple of instances of weirdness, though. First, the last two chemo cycles each caused beard hair to fall out, but just in the mustache and mouth area – not the cheeks or sideburns. Also, I had a little hair fall-out from the last cycle, which hadn't happened since the first cycle. So right now I do have hair on my head again, but it's finer than it was and also looks lighter – more brown instead of black. Mom said that that's what it was like when I was a baby. Who knows if it'll thicken back up? But what's really cool is that you can look at a single hair and see the effects of the chemo. The end of the strand starts out thin and slowly thickens, then suddenly gets really thin again coinciding with the next treatment, then slowly thickens up again. Kind of like tree rings, but different. You can see it in the hairs below that fell out during the last round.

Body hair also started regrowing about this time, too. Now, I hadn't mentioned anything about body hair before because it wasn't until the last half of treatment that I noticed anything. It didn't all fall out, but it did stop growing. Now, you have a natural shed rate, so what happened was that I lost body hair at what was probably a natural rate, but it wasn't being replaced, so over the course of treatment I kept getting barer and barer. I finally realized that I was getting some growth back when I noticed that I couldn't see where they had shaved my chest from the IV port implantation months earlier.

Well, I think this is actually a good place to start to wrap up. That ends chemo, and the next post will be about radiation. Last November, six months of chemo seemed like forever... half a year... My diagnosis weighed on me like few things ever have. Now, that part of it is done, and although I still think about the cancer daily, it doesn't pervade my thoughts as it did before. (It's interesting that the image that comes to mind that I am trying to describe when I say, “pervade my thoughts” isn't so different from what the disease, if left unchecked, would actually physically do to my body.)

On my last day, when I was checking out of the infusion room for the last time, as I reveled in the idea that the moment had finally come, a woman was being shown in and given the tour because she was about to start treatment. You could tell that the whole thing was still kind of unreal to her. You could see fear. Thankfully, she wasn't alone; she had another woman there with her who was taking in all the information. I talked to them a little, and she asked if the nurses were nice there, and I was able to truthfully say that they were – that they were all good people. But I can still see her in my mind. And when I picture her, I know what she was feeling then. And I know what she was about to have to endure, and it pisses me off to no end. It's funny... I don't really mind so much what I went through. Yeah, it sucked, but I'm not mad about it. I'm mad that it's happening to her. When I had my bone marrow biopsy, I saw a woman there who I had known a little over ten years ago when co-oping in another lab at GTRI, where she still worked, and I found out that she had been fighting breast cancer for the past five years. Thoughts of what she had gone through (a mutual friend told me her story) kept away any inkling of complaint on my part. She lost her fight as I was nearing completion. One of my best friends dad passed about that same time. I just heard about the six year old nephew of a guy I went to grade school with being diagnosed and going through preparation to start chemo. Those things piss me off. I can deal with this stuff happening to me; I can take what comes. But these others shouldn't have to. It makes me want to kill it. All of it. I feel more helpless toward others in that regard than toward myself, and that's really not something I expected. Maybe one day some researcher will need a piece of software that will help. Until then, I've just gotta live. To skip ahead a little, I'm almost done with radiation, but while I'm optimistic and feel perfectly healthy, I don't know that I'll be out of the woods. But right now – today – I am alive.

Lymphomania: Treatment 5 and PET Results

Well people, it's been a while. I wanted to get this update up sooner since it had interesting test results, but I was a bit too constantly-sleepy the first few days after treatment, and since then I've just been busy. Today, however, I've got nothing on the agenda and it's nice out, so I decided to take my laptop outside the condo (still inside a Starbucks, though) and do a little writing.

[An aside: It turns out there's an anime convention going on here, so everyone is walking around in costume. I always like people watching at events like this (conventions, renaissance fairs, etc.), not only for the dress, but especially just to see the group in general. Everybody are friends. It's like a bunch of people who weren't quite made for mainstream culture have finally found who they're supposed to be with. It's exquisite to see...]

First things first: test results. The "skip to the end" version is that the doc seems pleased with the results and thinks we'll end up finishing the series of eight treatments (only three more to go!) with follow-up radiation to the chest, and hopefully that should be that. Now, for the details...

Below are the latest images from the PET/CT scan.




As you can see, they are a lot less glowy (I think that's the medical term) than the originals. I was expecting intensity the same as the originals, but just shrunk down to a smaller area, but that's not exactly how it works. The amount of glowiness actually represents a value called "SUV", which stands for "standard uptake value", which measures the amount of radioactive glucose (the stuff they inject you with before the scan) that has been absorbed by a mass. The scale goes from 0 to 15, where 1 is baseline normal and 2.5 means there's definitely some malignancy going on. In addition to tumor shrinkage, as the cancerous cells are killed, it also converts over to scar tissue, meaning that you can't just go by tumor size. So originally there was one main tumor and several smaller secondary tumors. Almost all of the secondary tumors have fully resolved -- they're no longer there at all. There is one remaining secondary mass that was originally 2.7 x 1.6 cm with an SUV of 8 and is now 1.3 x 1.0 cm with an SUV of 0.8, so I think that means it's purely scar tissue. (While the doc was giving me the results, I didn't have a lot of time to absorb and come up with clarifications and questions, so what you're getting here is an amalgamation of what the doc said, what the actual radiologist's report says, and a little Googling I've done since then. When I go in for the next treatment, I plan to have a few questions now that I've had time to process.) The main mass that originally measured 10 x 10 cm and had an SUV of 15 (woo-hoo! I pegged the scale!) now measures 5 x 3 cm and has an SUV of 4. The doc's summary of that was that the tumor had shrunk by more than half, and the measured activity was getting to be borderline normal, meaning that a lot of the tumor was now scar tissue.

So now two questions for the doc are: 1) whether the scar tissue will go away with time, and 2) whether or not these results affect the original prognosis -- I'm not sure how these results compare to other comparable cases ("compare to comparable"... that sounds redundant... but the cases are comparable, and the results compare, so I think that's right...). Another thing I'm curious about is the third dimension on the masses. Reduced by "over half" is a bit too "rough-estimate" for me... Keep in mind that reducing a square by half on all sides results in a square that's 1/4 the original area, but doing the same thing to a cube results in a volume that's 1/8 of the original, so that third dimension can make a big difference.

So that's it result-wise. Everything seems to be on course, and I continue to pray that God will continue to heal me. Side-effect wise, I'm still not doing badly. It does take a little longer to recover energy-wise, and my stomach feels funny for a little longer, but intensity hasn't gotten any worse. This is still much better than I expected to be doing, and I only have three more to go, so I'm not complaining!

Alright... I think that's everything. Peace out!

Lymphomania: Half Way!

Howdy, everybody! I know it's been a few weeks, but I'm finally getting around to making another update. I've successfully completed treatments 3 and 4, which means that I'm officially half way done with this (hopefully only) series. Physically I'm still doing well; side effects are still mild and haven't seemed to be getting worse. While I'm taking this as a good sign, it does make for less interesting reading. Thankfully, in this case, I think less interesting is preferred. :) This entry will be a bit ... disjoint. Right now there isn't a really cohesive narrative to the story; there are just bits and pieces of ideas that pop up in my head and (possibly) develop. There are still some more in there, and I'll get them down eventually, but I'll just give you what I have for now.

One notable event that will be coming up in almost two weeks is my second PET scan. It's scheduled for Feb 25th and will be my first chance to get a good look at what's been going on inside of me. While visually the tumor has shrunk pretty dramatically, and I can't feel it anywhere in my neck anymore, the fact remains that the majority of the mass is totally unseen, so I'm pretty anxious to see the difference. I'm constantly trying to build models of how the tumor may shrink and how a change in one part may be indicative of the rest, but there's no real way for me to tell if one is any more valid than the other. For instance, lets say one part of the tumor started out a little over 2 cm across and then shrunk on all sides by 1 cm. That means that that part is almost gone. Does that mean a larger portion of the tumor somewhere else has shrunk by the same percentage or just by the same 1 cm on all sides? The two models will give very different answers to the final size of that larger portion of the tumor, but I have no clue as to which one (if either) is more correct. In the end, it's purely a game of wait-and-see.

Mentally... I think the best way to sum it up is that the novelty has worn off. It's so very odd to see how my treatments and the whole process have just kind of become routine. When everything started, it was such a huge deal; every little detail stood out in such stark contrast to the rest of life. Now, it's just simply the norm. That is not at all to say that I've begun to downplay what's going on, but when I compare how much I thought of it then to how much I think of it now... I guess one's mind just isn't really made to stay revved up to such levels constantly. I still think about what's going on every day, but it was a relief when I got to the point when I could just forget about it for a while.

Right now I'm really learning to appreciate "normal". When I was first diagnosed, I thought a lot about how we believe we're owed so much. We think we're owed 70 or 80 years to live, and anything less that that is robbing us of something. But that's not really the case, is it? Instead, we are owed precisely zero, and every day we are given is a something extra. It works the same with everything else in life. To not feel tired all day is wondrous. To not have some weird aftertaste in your mouth all day and instead have food taste like it should is a joy. To say that we take these things for granted seems at this point such a childish cliche that I'm loath to write it out, but I can't really think of a better way to express it. There's a part of me now that views the idea of complaining about everyday circumstances (or my own current circumstances, in light of what I know others end up going through) as profane -- as an affront to the blessings that we are all given. There's just too much good in the world for that.

Fun fact: the possibility of chemotherapy as a means to treat cancer was first discovered as a result of people getting exposed to mustard gas in WWII.

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!