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.