4th PET Scan Results

Today I was radioactive again and they looked in my guts for "increased uptake" of the glucose again to see if any of the tiny cancers are eating me up still. Kathy called me late tonight with my results. I wouldn't have known my results until next week if I didn't have her as my personal doctor; she really makes this whole cancer circus a whole lot better. Dang, I do get nervous when I hear my results though. Unfortunately, this will now become a part of my life: the tests, the results, the waiting.

This time, I had some increased uptake in my lower spine and hip, but they are pretty sure that is a result of my chemo and they do not think it looks like lymphoma villages. There was also a spot on the muscles in my neck. They think this is an "artifact", which sounds weird, like it is some archeological find of an ancient cancer-tablet with cancer-hieroglyphics. An artifact is actually an anomaly that is something like an error with the test. In my professional opinion, lymphoma in my neck muscles would be ridiculous, since it is just supposed to be in my lymph nodes in the first place - the bone was already a really stupid place to get it. So, as unsettling as that sounds, the read from the PET scan doctor is that this was fully normal and expected and that we are still looking good.

Besides the fact that my primary radiation oncologist thinks I should not get radiation, all of the other doctors that Kathy points me to think I should get radiation. I have another doctor visit with a very good lymphoma specialist and then next Thursday I will probably be deciding to get it.

Zometa Psych-Out

I thought I was having a checkup today, but it turned out to be a Zometa treatment, which meant getting an IV for 30 minutes. I was nausiated the whole time like a big wuss...it was purely mental. Zometa is just supposed to aid in bone rebuilding, and it has no side-effects that make you nausiated.

Tomorrow I have another PET scan. If the lymphoma-gnomes have reestablished their little dwellings already then I'm in big trouble. We are pretty sure that is not going to happen.

Fuzzy Radiation

Now I have to make more decisions. Prior to my talk today with my radiation oncologist I was for sure getting radiation. Now he is saying that maybe I shouldn't get it. There are lots of reasons why I should or shouldn't, and that would be boring to hear about. My case is just too rare, and there are no studies exactly relevant to my specific condition.

So, next up is another PET scan (for which my insurance will pay $6,000), then another meeting where we will decide IF I will do more treatment and then HOW I will do it. I say just stick me in a big microwave and see what happens...maybe sparks will shoot out of my eye sockets and ears.

And I'm back to my part-time job of doctor visits. Wednesday is a checkup with my medical oncologist, Thursday is my fourth PET scan, then September 7 we meet again and talk about treatment. I was starting to miss getting poked through my skin with needles, so I am glad to have another PET scan technician miss my veins and dig around inside my arm trying to jab my vein with her syringe of radioactive isotope goop.

Vegetables and Radiation

I have begun to eat some healthy stuff these days. I have also been trying to cook at home. Zach, my buddy from high school, moved in here last month and we have been working together to eat all these ridiculous food items: spinach leaves, onions, wheat bread, fruit, and other similar foods that were made for cows to eat. The unique quality about these foods, besides tasting less like delicious fat and more like the dirt in which they grow, is that they start going rotten immediately after you buy them, probably because they do not contain chemicals that cause Diffuse Large B-Cell Lymphoma and probably because they are not insulated in a fatty batter. My old diet of fast food did not require me to plan ahead in any way. This new diet has me planning two, three, or even four days in advance, which is completely stifling my living-on-the-edge lifestyle. I have also begun to use plates, forks, pots, etc. These are very annoying, because after they are used they become "dishes", which means that you have to wipe them, put them in the dishwasher, turn it on, then unload them into cabinets as plates, forks, and pots. Zach does a lot of it out of pitty for my cancer, so as soon as he realizes I don't really have it any more, he will probably cut me off. [By the way, it is really great having Zach out here, because not only is he serving as my nutritionist and personal trainer, he is also coaching with me. He fills in the holes where my cancer-brain is lacking. I just need to get him a day job that is flexible with coaching.]

My health is actually returning rapidly. I feel stronger every day, and my little coughing problem is kind of going away. Right now as I type, I just have that annoying, subtle whistling coming from my nose every time I exhale. I played volleyball with my varsity team (Sacred Heart Prep) and my leg didn't break off into tiny cancer-pieces. I was sweating like a madman, but it felt great.

Tomorrow I meet with my radiation oncologist. I have no idea what we are going to do, but I suspect we will at least formulate the plan for how to cook up my inerts with the radiation beams. I am thinking I will start the treatment this week. I guess I am kind of nervous about it, mostly because the treatment implies that some of those little badboys could still be in there gnawing on my bones; however, it feels good to know that they will die a painful death by fire.

Vacation From My Part-Time Job

It has been almost two weeks since my last doctor visit. It was feeling like a part-time job. These last two weeks have been a nice vacation from it. I have almost forgotten what it was like.

I have had a cough and some sinus congestion for about 3 weeks now, but I am being stubborn and not calling the doctor. I think it is allergies. It hasn't gotten much worse lately, so I am hoping I can get over this the old fashioned way - that is, without medicine. I'd rather try to use my lymphocytes (the white blood cells) to work on my ailments, which would be sort of ironic, since those same lymphocytes were the ones that went psycho on me in my hip.

My next doctor visit will be August 28. That is when my Radiation Oncologist will set up the plan for my radiation treatment. I don't know when I'll start my radiation, but it might be that week or the first week of September. It will be every week day for 4-5 weeks.

The only other interesting thing to report is that my diet has begun to include vegetables. Yesterday I ate at Chef Liu's, which is the best Chinese food in the world, and I ate vegetables. And I am not talking about just any old vegetable, it was literally a pile of grass-clippings. I even kind of liked it. I am turning into a California grass-eating hippy.

Bear On a Tricycle: Intro

I originally started my blog in a rush between doctor visits, during the time I was being diagnosed, to quickly disseminate information on my condition, because people were calling me like crazy. I used over 1900 daytime minutes that month, plus many more weekend and night minutes, so I was also trying to lower my phone bill. Now I don't know how many people are reading my blog these days, but random people come up to me all the time and tell me they read this thing. That kind of freaks me out, because I just kind of ramble on about what is happening within my organs and tissues and bones and sinusses and all that gross stuff. I assume that anyone that actually navigates here on occasion is ready to wade through my stories about my mucus or my waning physical appearance in order to make sure that I'm okay and all is well. I have now gone a week and a half of being semi-cured of cancer, and I have been away from the doctor long enough now that I am not physically or psychologically nausiated any more, so I am almost a human being again. And as a human being (rather than a lab rat), I have far less to report of late.

So I've decided to write about what is going on in my brain, which is, in fact, another organ of my body, and arguably, a major contributor to my well-being. It may be interesting to hear how I found my way of having a positive attitude through these circumstances. Or maybe not. Either way, I am comforted by the fact that you can navigate away as easily as you navigated here.

In my brain have been a lot of thoughts about where I got my positive attitude. I have also been trying to see how valuable a positive outlook truly is to a person. Is it simply moronic and ignorant to think in a positive way, especially when there is strong evidence to support a negative perspective? If a positive attitude is valuable, can it be perpetuated, encouraged, fostered, learned? These questions actually permeate my life, because they are also relevant to my current life passion, which is coaching youth sports. The problem with trying to write down what is going on in my brain is that it surprisingly takes many words; so I'm going to attempt to break my thoughts into a mini-series called "Bear On a Tricycle". The title comes from my first season coaching. I had a really fun player on the team (she was also very good) that when she would make a mistake (a rare mistake, no doubt) she would kind of freak out and look at me and say that I was "glaring at her", as if I was thinking angry thoughts about how I would like to poke her in the eye with an unsharpened pencil. I would reply that I definitely was not glaring maliciously, but that it was an empty stare, and that in my head I was thinking of a huge bear riding a tiny tricycle listening to circus music because that is just a truly funny scene because of how hard it is for the bear to ride such a tiny tricycle - I am not even sure real bears could, or would, do such a thing, but if they did, their look of determination while doing such a silly thing would also be funny. Essentially, this bear on a tricycle was my happy place: I was thinking encouraging thoughts and had no malicious intent; I was not dwelling on the negative ramifications of her mistakes (even if they were bone-headed) and I did not want to poke her eye out. The bear on the tricycle is my positive attitude and you can laugh at it, but it is good.

So, in my mini-series 'Bear On a Tricycle', I plan to relate some of my thoughts on how I turned from a pessimist into an optimist, how sports have influenced my life to that end, and how I have been prepared to face a broken hip, a wheelchair, and Stage IV Lymphoma through such a seemingly trivial thing as sports.

Done With Chemo!

I did it, made it through 6 rounds of chemotherapy! My eyebrows have faded, I'm fatter, my head looks like a messed up chia-pet, and I'm queesy, but my cancer is beaten back and my hip feels pretty good. My doctor came by my bed while I was getting my drugs and said "congratulations, you are cured". I thanked him, even though technically I am not "cured", I am in remission. Remission is good though. I think we can really call it cured in 5 years if it does not return. Remember, I still have a month more of radiation treatment to go.

I wanted to look back and recap what I've been through so I can remember what I have accomplished so far. Looking back at my medical journal, I have been to at least 32 doctor appointments in the last 4 months, since the April 11 diagnosis. Those include various MRI, CTs, PETs, chemos, checkups, planning meetings, physical therapies etc. Before April 11 I don't have the doctor visits recorded, but that is where it is crazy to think about. I probably had cancer for months (or longer) before my diagnoses. I was coaching 3 club teams during that time, all while brewing in my hip was this insidious blob of mutants. I had a broken hip throughout March while it rained that whole month.

I have overcome many psychological hurdles. I managed to sit in a wheelchair for 2 1/2 months and not go insane. I managed to learn to actually look at the needles as they stuck them into my skin and as they moved them around looking for my veins. I was awake while they put a needle into my hip and scraped out bone. I was awake while they screwed the thing into my left hip to extract bone marrow. I faced my own mortality. I found a way to enter that oncology unit with a smile on my face, even though it makes me sick just thinking about it. So far, I am mentally changed for the better, though a notch has been taken out of me physically. My next task is to rehabilitate my body to stronger than before.

The Moose

And there you have it, the moose. I am actually puffing my belly out in this picture to get the full effect, but there is definitely some gut there.

I hesitated to post it, but I have no shame any more. My body is no longer sacred, it is a bag of chemicals and organs and blobs of tissue. It is bent and xrayed and poked and poisoned and zapped. It is felt awkwardly, probingly and intrusively. It is forced into silly gowns that leave it over-exposed. Its viability is dependent on strange, sometimes egomaniacal, doctors. Inside it is churning and bending and fighting. It is the body of a lab rat; and a moose, really, is an upgrade.

There Is More Than One Way To Skin a Cat

One of my dad's valuable redneck sayings is "son, there is always more than one way to skin a cat". Well, apparently there is also more than one way to zap a cancer patient. I just saw a stanford-cancer-radiation-doctor for a second opinion and he had a few more ideas. I think his ideas were for the sole purpose of complicating matters as we go into the next phase of my treatment. He threw out a few more options, and that just means more decisions. Decisions are one of the worst parts about cancer because of the morbid way the risks are weighed against the costs: "Well, these guts are worth more than these guts, and if these guts go bad we can kind of fix them so we'd rather shoot them with radiation, but if these guts go bad then we will have to pull them out and feed them to pigeons". Here are more hard things about decisions:

1. I have cancer-brain.
2. I have a personal attachment to myself and most of my organs, creating a bias.
3. I don't have 8 years of medical school.
4. Everyone tells me something different.

The good thing about my situation is that I have doctors that I trust.

This guy was really good, and he brought up the possibility of shooting some beams in from angles behind me and then having them intersect at the point on my spine where my PET scan lit up. Apparently that way wouldn't hit my heart. Then he had the idea of using electrons on my sternum, which is some different kind of radiation. The best thing I heard him say is that the chances of getting cancer from the radiation is actually not 10% like the last guy said, but it is more like 1%.