Eerie Calm Stomach

I feel surprisingly strong right now. My stomach feels nice and I am just a little tired. This morning they started at 11:00 and they dripped, pumped, or pushed in all the same nasty stuff as before. I am backing off the medication a little bit from last time, to see if I can get it at comfortable level while still not vommitting. I was thinking today how I don't like those minty, black Girl Scouts cookies anymore because that is what the round 1 chemo had to throw back up to us into a bowl that barely was big enough.

Two of my players came today to paint my fingernails and to make me a sign while I was hooked up to the poison. I didn't let those punks paint my nails, but the sign was awesome. They visited me for a while until the nurse put some Lorazepam in my IV and I fell asleep by accident and when I woke and looked up with slobber on my face they were gone! I wonder if all of my problems could be fixed with going to sleep :) Haha, actually, they were really fun to have come by, even though I am sure it was incredibly boring for them to sit there, especially when I fell asleep.

When I got back to the Fuller's today I went through all my drugs to get it straight what I'll be taking. Turns out, just in pills, I'll need this:

Emend - antiemmitic (once a day)
Kytril- antiemmitic (new this cycle, morning and night)
Calcium - zometa needs to build bone (morning and night)
Reglan - Undulates stomach, my chemo makes it fall asleep (before food and bed)
Lorazepam - antiemmitc (whenever needed, 2 make me very drowsy)

Plus I have some other backup drugs that you don't want to hear about. OK, like suppositories and stool softeners, I told you that you didn't want to think about those things! No need for those yet, but I'll let you know if I do (just kidding).

Chemo 3 of 6 Tomorrow

This last weekend I had my friend Chris in town. We go way back, so it was really nice and relaxing with him here. I feel great today. Of course, tomorrow they'll knock me down again. Today was also a good day because I was given a llama from Chile for some reason (with real llama hair, no less). That reminds me of the time I went to Chihuahua, Mexico and I bought this rooster thingy that said "Chihuahua" on it. My roommate later would throw it away without my approval because it was ugly and because it said "C ih ah a" after the letters fell off. So now I have a beautiful llama in my room courteousy of some very cool Sacred Heart Prep volleyballers.

Tomorrow is round 3 of chemo. Since it turns out that I was stage IV, I have 6 rounds. 6 should be more than enough to kill every last one of the rogue mutants. If I stay on schedule, my last round of chemo is August 2. Then I would have some radiation to do; none of those details have been revealed to me yet.

Scooter

I have hit another all-time low. Wednesday I went by Target and parked in the handicapped parking spot. Outside my door was one of those electric powered scooters. I got on it with a stupid smile on my face, because I've never seen anyone under 70 on one. As I was driving around inside, I was learning to figure out how to control the thing. The lowlight was when I was right in front of some girl trying to turn around in an aisle that was too small for turning around. I hit the front and the back a couple of times each, but I never looked up, just focussed on the task and cruised away with the same silly grin.

I've talked about how the IV works. I finally took a picture to show you.

When they insert the IV, there is a needle running through that plyable plastic part. Once they penetrate the vein, they retract the needle and advance the plastic sheath down the vein. Almost all of that plastic goes down into the vein.

Stage IV Confirmed

The results of the second PET scan are in. The areas that lit up on the first PET scan (the right hip, backbone, and sternum) all shrunk significantly. This is mixed news. Great news because we know my cancer is responding and because we know that I was right about my read of my MRI of my spine. Bad news because I am now confirmed to have been Stage IV. So, that means 6 rounds of chemotherapy and some radiation on my hip and my backbone. Probably no radiation on the sternum because that would cook my heart. I was fully expecting these results. I am pretty sure we are not going to do a spinal tap, because now they are saying that it is just way too unlikely that the cancer got into my backbone.

Hotpocket

There is the proverbial hotpocket being shoved into the microwave. The first huge donut machine is the CT Scan (said "cat scan"), the second donut hidden behind it is the PET Scan. The CT Scan is used to "plot" my body; it uses x-rays and is very quick. The PET Scan takes about 30-40 minutes because it has to sit in one place for a while picking up the positrons being emitted from whatever hotpocket is in there. They found that I am a delicious ham 'n cheese pocket, and I have runny goo in my hip that tastes delicious when sprinkled with rituxin and sodium-chloride.

Before the scan, they set up an IV in my arm. Of course they had to mess up on my left hand, then stick me again on the right hand. Then they brought in a shiny, silver, metal box about 1 foot by 4 inches with a black handle on top. Inside the box was the "isotope" they were going to inject into me. I think that the "isotope" was connected to the glucose. They squirted the contents of the mysterious box into my vein, which is no stranger to ridiculous foreign substances. Then I waited for an hour reclined on a chair without moving while the isotope went throughout my body.

Tomorrow I should know a little something from the scan.

Second PET/CT Scan Tomorrow

They are going to check out my positrons again with the combined PET/CT scan tomorrow. I have to fast 6 hours before the test. They will inject me with glucose and then they will scan me. The PET scan part will look for areas that have increased metabolism, or uptake. Cancer cells have increased metabolism. We are looking to see if the spots on my hip, back and sternum shrink. If the spots on my hip shrink, then the chemo is working. If the spots on my back and sternum shrink, then we know the chemo is working on them, and we also know that they are cancer, and then we know that I am Stage IV. It may not make any difference, though, because I am probably just getting 6 rounds of chemo whether I am stage I or IV.

Jason Trip Day

Sunday was the day they held for me at City Beach Fremont. The day was going to be a City Beach family day, but was turned into a day where they charged entry to raise money for me. Aaron B. spent some serious time setting this thing up and this was his brain-child and he is pretty dang cool.

And the total number of people at the Jason Trip day: 175! I wasn't sure if we would have many people, and I especially didn't expect THAT MANY to show. It was overwhelming. There were kids and parents playing volleyball and basketball, screaming in terror on the ropes course, bouncing on the huge inflatables, playing hyperbowl, and eating. There was a pretty long line to get on the zip line and the bungie rope, but I think the biggest line was the line that formed to talk to me! And I talked to people the whole time, and I know I didn't even get to everyone. And it couldn't have been any other way. It is truly a great feeling to hear from so many people offering so much support. I wish I would have had a chance to talk to everyone and personally thank them for coming.

There is too much right now to be thankful for, and I am thankful for that. That last sentence makes my brain experience infinity. I have never really needed much, therefore I have never really received all that much help...I am trying to get used to it. It is humbling. If you came to my day or donated something or sent me an email or talked to me or took a peek at my blog (I know you did that!) just to see how I'm doing, then THANK YOU!

I wanted this blog to be my best blog of all of them, since it was after the Jason Trip day and I wanted to do it justice, but my brain is overwhelmed right now and I feel like it is really no "eyebrows" in terms of creativity, coherence and focus. Sunday was really tiring, then today I worked at the hospital, then talked to an aweseome, non-blood-sucking lawyer (another mom of a girl I coach) about finishing the touches on my trust fund and doing 'estate' stuff (you gotta do it even though you won't need it...and no you cannot have my new xbox 360...and no I don't have an 'estate') and then I had the Sacred Heart Prep sports awards night where I had to talk in front of hundreds of people which I proceded to be late to because I missed the exit and went accross the San Mateo bridge by accident (it is 10 miles) then turned around and paid $3 to return (this is the second time in my life to have done that). So, I'm tired but happy and thankful and I am going to bed.

Cancer Pulse

I covered yet one more wing of the PAMF clinic on Friday because I went in to get an EKG. EKG stands for electrocardiogram, yes, ECG would normally be the abreviation (and sometimes is), but somehow we call it EKG because that is how the Germans say it. EKG does sound a lot better, so I give props to the Germans, but nevertheless, I hate it when things don't line up. Like when I used to play legos and I needed both sides of whatever spaceship I was building to have symmetry both in structure and in color. I was exasperated every time one of my friends would build something that would have one piece on the right gray and the other yellow, compromising its bilateral symmetry. I have become less nerdy about things like that though, which would explain why my room looks like the same carnage that is going on within my acetabulum.

To get an EKG, they have you take your shirt off and then they stick on about 10 different wires. They would have shaved my chest, but we took care of that last week. While the nurse was hooking all the wires up to me, I asked if it was going to hurt, because my imagination was being very creative with what those wires would do. She said, "oh, I forgot to tell you, yeah, this won't hurt". It didn't hurt, and the test showed normal results. I had the EKG because I have had an elevated heart rate for a few days, with some chest discomfort. My pulse is comfortable at about 70 beats per minute, but for a few days it was at about 100 bpm. I had another chest x-ray which was negative (which means good). I had another blood draw...this time I watched the needle go into my vein and was not bothered by it at all...I am becoming an expert cancer patient. My CBC (blood count) was actually really good, my white blood cell count was in the normal range, which means my Neulasta worked. There were a few counts that were a little low (neutrophils and platelets), but nothing extreme or unexpected. My metabolic panel showed the rest was pretty good, which is great, because now I don't have to try to swallow those potassium pills any more.

The elevated pulse could be the result of anything. Same with the chest discomfort. In fact, the chest discomfort could cause the elevated pulse, or vice-versa. Plus, inside your chest is more than your heart. There are all kinds of guts: stomachs and lungs and gall bladders and esophagusses and ribs and muscles. I could also psychologically be causing my own stupid pulse to increase, which I am really trying not to do, which is probably counter-productive. This anxiety is a possibility, though I do not feel anxious, but we have to consider it since I do have a busy schedule of stuff to do and I do have cancer. I also have a slew of new drugs coarsing through my veins that may affect any number of the guts in my chest. I am also getting fatter and more out of shape (and therefore more annoyed (note: getting fatter is better than losing weight which hurts the prognosis)). It could be any of these things and it could be a combination of all of these things. I just finished Lance Armstrong's book, and he also thought a couple times that his body was freaking out on him when it really was just being a normal fickle body, so I figure I just need to be calm. I am just trying to be really picky with my body now, because I was trying to tough it out and not go to the doctors for weeks back when I had a hip fracture and a huge tumor gnawing at my bone. I was still going to work and walking around coaching and everything back then, so that is my own self-confirmation that I am not a huge wimp.

My pulse is at 70 this morning, and I have literally been having sighs of relief.

A Picture of Chemotherapy

I prepared some images of my chemotherapy. I go in once every three weeks to get it. These pictures are from Round 2 (props to Heath for the pictures). Note that Heath had a keen eye for the important details, so watch out if you don't like blood. I just pretend it is Otter Pop juice or something, then it's all cool.

I started my day by wheeling into the Oncology clinic. I entered the side entrance in the garage because I know my way around now. You can see my buzz of hair in the picture. Some hair fell out into my hands that morning.

I wheeled myself inside and checked in. The first thing on the agenda was to get a blood draw to see if my blood counts would indicate that my body could handle the next round of chemotherapy. The first round I had to go to the laboratory for them to draw the blood first, but this time they just did the blood draw in the Oncology unit. IV's are amazing, they actually insert a needle into your vein, and then retract the needle, leaving behind a plyable catheter. I always thought that a rigid, metal needle remained in your arm. This is where my nurse, Lindsey, drew my blood (notice the arm hair...we'll get to that later).

They took the blood to someone that went through and counted my blood cells, plus they did a metabolic panel. I had to meet with the doctor about the results. That doctor set me up with the list of new drugs I would take to fight the side-effects of the chemo. I popped in an Emend at about 10:00, once I knew that I would be getting chemo. While waiting for the blood results, they were giving me IV fluids, which is just a saline solution that goes into your blood and hydrates you. It also helps to know if you have a leak in your IV, which I ended up having.

That pictures shows me showing off my IV leak. The Otter Pop juice is running out of the place where these couple of arm hairs got caught in this screw thingy. Blood leaking is not a problem at this point, because if there was a little bit of saline solution leaking out, then it is no big deal. But we had to fix the leak before my first two chemotherapy drugs were administered because they are vessicants, meaning that if they spilled out onto my skin or outside of my veins it would burn me to the point where I would need a skin graft. In order to work on the leak, Lindsey had to rip the tape off multiple times. The hair ripping out is the most painful part of cancer, though it is only momentary, and always comedic. Heath did a great job of capturing the piece of fur attached to the tape she ripped off my arm while it was sitting on my PAMF sheets.


As I sat staring at that ridiculous patch of fur sitting on my bedsheets, I decided I would buzz my arm hair when we shaved my head.

Lindsey, fixed the leak, gave me an anti-emitic, Kytril, and then pushed in the Adriamycin and Vinchristine. This is what the Adriamycin looked like the first round while they were squirting it in me.

They do 50 cc's of Adriamycin, then 2 cc's of Vinchristine. After those vessicants are done, they flush my veins with saline, then I wait as the Cytoxin drips in over an hour and a half or so. After the Cytoxin, they flush me again, then give me the Rituxin, which is a monoclonal antibody. Rituxin is amazing. To make it, they inject a healthy mouse with cancer (thanks, mouse!), then they extract the cells in the mouse that produce the antibodies that mark the cancerous cells. The cells they extract can continually produce the antibodies. Antibodies are proteins that stick to the outside of antigens (foreign, bad substances). So, the mouse juices squirted into me attach on my cancer clumps and identify them for destruction. Pretty sweet.

We probably got out of there at 6pm or so. It was an all-day fun time. I got hopped up on some drugs. You can see me here hanging out in Mountain View on Friday. My eyes aren't exactly right. I also apparently, had not changed clothes.

If you had an x-ray camera and you could see inside my right hip, you would find the mouse juice dousing my acetabulum. If you had a sensitive sound catcher, you would hear the cancer cells shrieking in agony as the mouse juice pointed them out and the CHOP chemo drugs strangled them by their cancerous necks. If you scrolled up a little though, you would find equal chaos brewing in my stomach. This picture is of a walking/crutching pharmacy - a sack of skin encapsulating a million drugs. I know we are more than the the summation of the fluids and clumps that our skin retains, but sometimes you just feel like a lab mouse.

Zometa

Last night I was up all night reading Lance Armstrong's book between trips to the restroom. The trips to the restroom were separated by 20 minute intervals. Not only did I have to get out of bed, but I had to crutch over there, adding insult to injury.

I called the doctor today and it turns out that they had an infusion of Zometa to give me this week. The Zometa is supposed to help my bone come back strong as the tumor leaves. I went in to get the infusion today so they could also check me out since I wasn't feeling so hot. They did a metabolic panel, which is where they check the levels of different stuff in your blood like creatinine and protein and potassium. My potassium is up from before, but somehow still a little low. I guess I need larger pills? I got another IV set up and the Zometa dripped in for 30 minutes and then they gave me some fluids to help me recover from last night.

Eyebrows

I noticed today that eyebrows are really wierd and they shouldn't be because most everyone has them. When I look in the mirror, I cannot see anything else but these two pieces of absurd fur resting above my eyes. I'm not saying I want them to fall out, because that would also look wierd. I just notice them now because they are some of the only hairs I've got left. In case you also have an oddly inquisitive mind like mine, you can read why we have eyebrows. Basically, they are saying that if you are born without eyebrows you will be eaten by predators because sweat will get in your eyes while you are running for your life. I'd be in trouble either way because I can't run. If I do lose my eyebrows, though, and a predator does get me, I think I would chuckle while the animal was eating me because they would be eating some cancer (especially when they would gnaw on the bone; specifically my T8, sternum or acetabulum). And that brings up an important question that you will not want me to ask: did the animal you are eating for lunch today have cancer?

Foosball Champion

Some kids at the hospital created a Foosball Championship Belt out of construction paper, and this one highschooler won the belt from its creation and had not lost a single game. His prize belt was hanging on his IV pump this morning in the classroom. I stopped by the rec room after school today to play the so-called Foosball Champion. He had an IV in his arm, but I had to hop on one leg, so it was pretty even. Since I'm sick too, I didn't feel bad yelling "take that suckah!", and I didn't feel bad yelling "BLOCK" really loudly and obnoxiously every time I blocked him. I felt great taking his belt and draping it over my bald head and proud grin after I beat him solidly. I succesfully defended my title for one more game against another kid, but then the Foosball Champion played me again and destroyed me and sent me hobbling away on my crutches, belt-less and humiliated.

I wish I could blame my loss on my physical condition, but I am actually doing pretty well. My stomach feels awkward and smushed, and I am somewhat fatigued, but I was able to work at the hospital, play foosball, recover from humiliation, coach some volleyball, and write a blog today.

I was forwarded a really cool email today from Willowbrook Juniors Volleyball Club. They are this really good team that we somehow beat in Dallas in a close three-game match that ultimately earned us our open bid to Junior Olympics (yes, it turns out we cannot use the bid because of paperwork). The email was from their club telling us that their 14's team bought one ticket per player to the Jason Trip day! They can't attend, because they are back in Texas, but I just thought that was a very cool gesture of sportsmanship. I am shocked because I have no idea how they knew about my day. Their team did end up getting an open bid, which is great, because they are really good. Also, a run-on sentence side note: I played at the Willowbrook facility back when I was playing USAV during college in Texas and I slept in my truck in their parking lot and probably was not allowed to but I was saving money by not getting a hotel room but it would have probably helped my game to have slept in a bed. We won a t-shirt there with a really happy looking gator on it and wish I still had it. So anyway, go Willowbrook!

Promethian Pottasium Pills

I think I have escaped the nausea stage from the chemo unscathed. Now, since my pottasium levels are low, I get to attempt to ingest these mammoth pottasium pills that are so large that the giant antibiotic pills shrivel in fear at the sight of their monstrous counterparts. If the antibiotic pills crushed the bacterium with their fat bill-behinds, then these pottasium pills must roll through like tanks obliterating all infidels. The sign on the side of the giant pottassium pills says "do not chew or crush, you must suffer excruciating pain while our absurdly sized pill slowly creaks down your throat lining it with extra-important pottasium streaks."

I am surprised this round of chemo that I feel pretty decent. Something is definitely not quite right though, maybe that would be the fact that I have about 3 lbs of mostly toxic chemicals swarming throughout my body.

My leg feels great though. I tried swimming laps and I am good to go. I am set up with a physical therapist coming up soon so that I can start strengthening the muscles. I think I will get strong enough to become an Ultimate Fighter or a Gang member. Next up on my list is in a couple of weeks I have a PET/CT scan to see if the little dots on my back and chest change in size, and we'll reevaluate at that point. I also need to start working on drinking 1 quart of non-fat milk per day to help my hip joint regrow...I especially need that stuff when I get my Zometa (for bone regrowth) once the adminstrative gibberish gets out of the way.

Potassium Potatio

Last night I slept all night then got up for an 8:30 appointment back at the needle demon office. They had to get me another IV so they could give me some additional potassium. They also gave me a sutbcutaneos shot of Neulasta, which is a White Blood Cell Growth Factor.

Then, I went back to the Fuller's tub and pool and kept on with my light drug haze sleeping on and off and most important...no vomitting.

No Suking Po Far

I freel brilly furny right now. I am frlying irn a spracship and If I thfro-urp I freel lrike it will flroat in front of mre since we are in sprace.

I do have some pretty sweet drugs in me and they are in a battle against the nausea. I took the drugs that are supposed to knock me out for the night; the idea is to have me sleep when I want to vomit. Tomorrow I will be on similar drugs and I will be out-of-commission. The Emend/Kytril combo has worked pretty well so far.

And now I have the dome, my bald, shiny head. I shaved it because my hair was starting to fall out into my hands. Now I definitely look like I am sick...wheelchair and bald. It is 10:15 and I have not yet awarded the Fuller's another bowl of Jason Trip's Homemade Stew.

PS. Jason is on many drugs, including his chemo, but doing great. -Heath Williams

It's In the Bone

My friends Heath and Scott are here. Heath made me a shirt that says "it's in the bone", referencing Ace Ventura: When Nature Calls when that guy throws the spear to Ace and it goes into his leg accidentally, causing Ace to yell in agonizing pain that the spear went into his leg bone. Anyway, that is where my cancer is, which is rare and weird and really annoying still since I can't walk. Dr. King today told me that I am free to move my leg and work it out as long as it causes no pain and I bear no weight on my hip. I think the concensus is that I will not be able to put weight on my right leg for the duration of all treatment, chemotherapy through radiation (probably 6 months or so).

Tomorrow is round 2 of chemotherapy. I get a blood draw at 9am, then if my blood looks good I will get my chemo and wbc factor and bone regrowth stuff. I am really, really, really hoping my Emend works to stop the vomitting. I am sure anyone reading this hopes the same, because you know I will probably describe it in detail and possibly take a picture and post it in my next blog.

Hemangiomas or Neoplasms?

I saw a Lymphoma specialist today, Dr. Advani. She will help coordinate most of my care, even though the treatment will be administered by Palo Alto Medical Foundation. She makes a lot of sense, and is extremely good. Her office is in this pristine, brand-new Stanford Cancer Center. There were tons of bald heads and face masks funneling through, but I was still just about the only person in a stinkin wheelchair. Dr. Advani explained that only 5% of the patient population at Stanford has Primary Lymphoma of Bone (PLB) the way I do, so I guess I am special. She explained that in these rare cases they have a very high success rate. She reviewed my recent MRI with me. The new spots on my MRI are very small, the one on my back is 11mm, the sternum even smaller. It is possible that the spots are merely hemangiomas (birthmarks), even though they are concerning. We will do another round of chemo, then we will see if it shrinks. If it shrinks, we will know the spot was a tumor, and therefore I was stage IV, and therefore I will have at least 6 rounds of chemo (and I may need spinal taps). If the spots stay the same, we will probably say that the spots were hemangiomas, and therefore we will know I was in stage Ie, and therefore I would probably only get 4 rounds of chemo. After everything, I will get radiation.

I also learned that I will probably be non-weightbearing on my right hip for the duration of chemo and radiation. So, I'll be in a wheelchair or on crutches for quite a while. The good thing she said is that even if I am stage IV, her conservative estimate is that I have a 75-80% chance of cure. Pretty good odds to bet on.

Smell

The chemotherapy messed up my nose. My shower water smells like popcorn for some reason. Also, one of my players took off their shoes today and I almost gagged from the smell. I don't think the fumes were as toxic to others that only are blessed with normal human smell.

I coached today in Sacramento, then drove to Saratoga for a wedding. I am tired at the end of a long day, but my team played great and the wedding reception was cool and now I am back at my house ready to go to sleep so I can wake up at 5:30 to drive out to Sac again.

Next week Heath and Scott come out. I have a first-meeting with a great lymphoma doctor on Monday to go over a treatment plan and to talk about the MRI and all that. I have a meeting with the good orthopedic surgeon (Dr. King) Tuesday, where he will check on physical therapy I can be doing for my right leg. Wednesday I have my normal chemo scheduled. Sometime next week should be my lp, but I think I'll know all about that Monday.

2nd post and the 2nd Harvest

I just had to post again, not 30 minutes after the last "daily post", because I just got an email about the "Jason Trip day" at City Beach. I had kind of heard that they were going to do this, but I wasn't sure until they morbidly ripped my head off and stuck it on a yellow stick.

Look at that smile though, BING! That picture is pre-buzz and I don't know how they got it. You can read about my day at www.citybeachjuniors.org.

Well, it is nice when you get kicked in the pants to have a day named after you. I also had a good day because I found a cool place for me to live with my vato, Greg. He doesn't know yet, so hopefully he will read my blog. Maybe I will call him so we can get on it. It has a really nice pool and it is big and it is nice and better than my cancer.

Getting Kicked In the Pants Repeatedly

I was telling a friend about my newest developments and he had a great line to me: "man, you just keep getting kicked in the pants!" And he is kind of right, especially today, with the following two pieces of not-so-good news.

First, the read that I made yesterday of my MRI was mostly accurate, I probably have an additional tumor in my back (I did miscount, it was the T8, not the T7, vertebral body that had the likely neoplasm). So, the kick-in-the-pants is that I have what is "consistent with" (looks like) a "metastatic focus" (tumor) in my thoracic spine (backbone) and in the sternum (middle of the chest-bone). That probably places me at Stage IV Lymphoma, which is the most advanced stage and probably makes it so that I will need a lumbar puncture (LP/spinal tap) where they stick a needle into my vertebral column and suck out some cerebrospinal fluid to test if there is lymphoma in my central nervous system. If it is (and maybe if it isn't) in my CNS, they will inject me with chemotherapy in my spinal column, in addition to the normal intervenous and oral chemotherapy. They have to inject it in my back, because the chemotherapy injected into my blood cannot pass the blood-brain barrier. Stage IV also doubles the rounds of chemo I need, from 3-4 to 4-8. The Stage IV probably lowers my prognosis, but no one really has given me one. I still have a very favorable prognosis either way, they still really, really think I'll be cured.

The second kick-in-the-pants is that we just found out that my City Beach volleyball team, which double-qualified in open for Junior Olympics (top 28 teams in the nation) due to phenomenal wheelchair coaching and a little skill from the players, will not be able to go this year because of paperwork that was filed less than 1 week late. It was a technical mistake that should not have been made by City Beach, and a technicality with which USA Volleyball is being extremely strict. I think I am more bummed about this than my stupid cancer! You know I am a volleyball coaching nerd if that happens.

Two pretty firm kicks in my pants. Are these things unjust, and should I play the victim? If I do choose to be a victim, I will ensure myself some self-inflicted misery on top of the painful pant-kickings, I have done that before in my life. I'd rather just experience the physical pain and avoid all the psychological traps. We'll see just how much vomit piles up though and see how I wade through it (I'm sorry, I haven't talked about vomit in like 3 days).

Don't Read Your Own Test Results

Yesterday I received my pass code to view my test results online. I was able to read through the results of all of my tests: CBC's (Complete Blood Count), MRI, CT Scan, PET scan, and X-rays. I am starting to actually understand doctor lingo. They used to have to translate it for me: they would say you have what is called a "permeative lytic process, which means it is like termites kind of getting in there and eating your bone". Great image. Early on, in my first MRI, they mention suspicion of a "neoplastic" process...neoplasm is the tecnical term for cancer. Neo is Greek for "new" and plasma/plastic is Greek for "growth"...a neoplasm is a tumor which means abnormally growing tissue. So, the upside to reading your test results is that you can learn to talk in crazy mumbo-jumbo, like "the anterior cortical destruction of the acetabulum is indicative of a lytic process, it appreciates a neoplastic, pathological process permeating the right illiac crest and the acetabular cup. The bone scan indicates significant uptake in the right hip and acetabulum and a small amount in the thoracic spine." The downside is that you realize that the doctors aren't really filling you in with everything that they are looking at, and that they use the code language so that you don't know what is going on because they think that you will freak out. For example, they did not notify me that the PET scan also noticed a potential "additional lesion" on my sternum. I have an email in asking my oncologist what that is all about.

By the way, the radiologist has not read my MRI from this morning yet, but they printed out the film for me (because I need it for my second opinion on Monday) and I looked at it and the vertebrae that they were talking about does look different than the other vertebrae on my back. So, in my professional opinion, the MRI shows an abnormal marrow signal in the T7 indicating an additional neoplasm. But I could be totally wrong. If I am right though, I am going to charge myself $701 for that read. The other thing I noticed from my MRI is that if you zoom in at the right angle, and you see the muscle there with the edges of the spinal column sticking out, my backbone looks like a delicious rack of beef ribs. Also, if you look at some of the other images, it looks like an ultrasound and I may be pregnant again. I think I'll wait for a professional to read my results and let me know what to do next.

My Hip Feels Good

My hip feels good. I am moving my leg all over the place now, just putting no weight on it, so I have to drag it around. Tumor must be going to tumor heaven. Kind of funny story today. I went to Togo's, a sandwhich place, and they asked me what happened to me. I told them I hurt my hip. Then they asked me again and really wanted to know. So I could not spare them and I had to let it rip. But this reaction was hillarious. Instead of acting all awkward and sad and fumbling about, she just tells me that her brother had brain cancer for like 6 years and battled it hard but eventually just ran out of gas. HA. I am glad she felt no awkwardness with me. I am tough about hearing stories about that, so don't worry about how I took it, I've even SEEN some very sad cancer cases up close. Just laugh at how she must not have gotten the memo that you typically tell cancer stories to cancer people when there is at least some relative success. She helped me carry my food and drink to my truck outside and it was delicious.

Internation Prognostic Index

I saw my oncologist yesterday for a check-up. I had low, but not dangerously low, white blood cell counts. So he decided to give me a boost in my next IV during chemo that will probably stop my wbc's from dropping next cycle. I picked up some Emend for next round too for anti-nausea. They are also going to give me some stuff that will help bone regrowth for my hip. Then I mentioned that I was having trouble getting to sleep the last couple nights, so he prescribed me some sleeping pills. I am becoming a walking pharmacy. I took the sleeping pill last night and went into a coma.

The Ann Arbor staging system is the common system used to define the stage of Non-Hodkin's Lymphoma (NHL):
I. Lymphoma is in lymph nodes in one region
II. Lymphoma is in two groups of nodes on the same side of the diaphragm
III. Lymphoma is in groups on both sides of diaphragm
IV. Lymphoma is widespread in an organ or organs, skin, or bone marrow.

Then they use letters after the stages. They put a 'B' after the stage if the patient is experiencing 'B' symptoms, which are soaking sweats, high fevers, and unexplained weight loss (I don't have these). If you don't get a 'B', then you get an 'A'. You can also get an 'E' if the lymphoma has spread into an organ or bone from a lymph node.

Notice that none of these stages include having lymphoma in BONE. I don't have any swollen lymph nodes in my body. So, they are going to give me Stage Ie if it is just in my hip. My situation is extremely rare, however, they have had a lot of success in those rare cases of lymphoma in bone. If I have lymphoma in my back bone too, then it counts as widespread and I am jumped to Stage IV...the treatment would be the same though, just a little longer. If I have lymphoma in my spinal fluid, I am also stage IV, but then they add chemotherapy that they inject into my back.

The Internation Prognostic Index is used to help a patient know their odds of successfully overcoming their lymphoma. You get one point if you have any of the following:
- age over 60
- stage III or IV
- presence of lymphoma outside of lymph nodes
- poor performance status...needing lots of help with daily activities
- elevated serum LDH

Right now, I can kind of get a point for presence of lymphoma outside of lymph nodes, but they are really talking about it being in other organs and stuff, since it just doesn't occur in bone. I do need a little help with daily activities, but that is just because I am in a wheelchair, they don't give me a point for that. My LDH was normal and I am well below 60 years old. So, my IPI is kind of 1 (or less) right now, it will kind of go up to 2 if I am in stage IV. IPI of 0 or 1 is "low" and 4 or 5 is "high". Therefore, my IPI is low, and it is basically going to stay low even if I am in stage IV. A low IPI means the best prognosis. 75% of people with low IPI for their Lymphoma live longer than 5 years. That stat is for all lymphomas, and since my lymphoma is a "good" lymphoma, I probably have even better odds. And odds are just odds, and are pretty much pointless, because really you either get over it or you don't. When you get bad news, it is all about your perspective, if you need odds to get your brain around your situation, then you get the odds. I don't need ignorance to make myself feel better, so I figured my odds. The important thing to remember is that you can always deal with any situation as it comes, and you always have a choice of how you are going to deal with adversity. Choose to be miserable or choose the way that makes yourself and others better off and be thankful for what you have.

Up Late and Wired

For some reason the last couple nights I've had trouble falling asleep, so I'm up late. Right now I feel better than I did before chemo. My cough is going away, I have a lot of energy, and my head feels nice and streamlined with the buzz. I am sitting here now trying to watch my hair fall out but there is none falling out. I am almost getting tired of waiting. I really hope the patch of fur in the middle of my chest falls out though, because it is really unsightly. I have an appointment tomorrow with my oncologist and I have no idea what time I am supposed to be there. I am going to have to pull a Cancer Card. I do know that I have to go by the Laboratory first to get my blood drawn by a really nice guy named Jose that has taken two tries to draw my blood each time I go in. The Laboratory is on Level A with the CT/MRI, Radiology, Nuclear Medicine and Medical Oncology. I go to all of those places for whatever sadistic, alien-probing, painful, radioactive procedure they have for me. They always involve a needle, usually a hospital gown mini-skirt, and sometimes a giant machine that microwaves me while everyone else stands behind large, protective, radiation-proof walls to avoid its mutating rays.