Self-Radiated My Tumor

I went to the Stanford Oval and watched my friends play volleyball. It was a nice day and I got lots of sun and it felt really good. I guess I would watch out for cancer from the sun, but fortunately, I already have cancer. My friend sent me Lance Armstrong's book to read and I feel very fortunate I don't have what he had, ha! The kids at the hospital last week inducted me into the Cancer Club, and they gave me a set of Cancer Cards to use whenever I need them. They are hillarious. They are things like the "Shut up and listen, I have Cancer" card and the "Sorry for speeding officer, but I was on the way to the hospital, I have cancer" card. Apparently, the kids use their cancer cards all the time, like to get into college and to get out of cleaning their room. I was also given some oral mouth rinse that is good for helping keep mouth-sores away...the kids say mouth-sores are the worst part. They say everything is the worst part right before I get it, just to scare me. MRI Thursday. Meeting with my oncologist May 1.

Mailbox Humor

Today I looked like a wierdo yet again. Amidst the cancer haze I forgot to check my mail for like a week so I went to get my mail out this evening. It was actually about 12:15 in the morning. The only way to carry it was to stuff it in the front of my shirt and tuck it in while I crutched my 8 pound pile of Albertson's coupons to my room. Of course, I looked like I was either (a) pregnant or (b) wierd; we can rule out (a) because the PET scan was negative on that one.

Update on medical condition: The bacterial infection is subsiding due to giant antibiotic pills...seriously huge pills...like nearing an inch long...ridiculous to swallow...probably killing the bacteria by sitting on them with their fat pill behinds. I feel great though despite having to enlarge my neck like a snake eating a moose to get these pills in me. My sense of smell has returned and I have discovered that the chemo has heightened it...now I can differentiate my clean and dirty clothes from accross the room.

I have a couple pictures uploaded. One of me coaching in Dallas, and one of me getting my buzz when my "friends" left a rat-tail on the side of my head. That was only temporary though, it's all buzzed. I'll get a picture of my cool buzz before it starts looking patchy and I shave it all the way into a shiny dome.

Antibiotics and Antiemetics

Sadly, I was just watching the jump-rope championships, so I decided to update my blog. I guess I came down with a cold in Dallas. It was probably a virus, and I'll spare you the details, but the color of the special sauce in my nose, ears, and chest is indicating that we might also have a little bacterial infection developing. So, my oncologist has added antibiotics to my list of drugs to make sure I won't get a fever and an out-of-control infection within my face if my blood counts go down. I had a blood draw yesterday and my counts were really good, so they think they won't even go down that much. I have mostly stopped taking my narcotics because my hip pain is way down, but I am still taking some antiemetics (that is the cool way to describe drugs that stop you from puking). My doc is pretty sure he has worked it out with my health insurance to give me an expensive antiemetic called Emend for next round of chemo because I had such a bad time of my first chemo. They had to try out the cheap stuff on me first. My doc also said I should not go coach in Reno this weekend. MRI of my back is scheduled for next Thursday, after that I will meet with a very reputable lymphoma doc at stanford that will help provide a second opinion to my already good oncologist. They say that the milk dud in my back is probably nothing. Now I just need to rest this cold out with my signature toilet paper shoved up my nose.

Back in California

I'm back in Cali, medal still around my neck! I am tired and now I have that allergy stuff in my ears and sinusses as I prepare to go into my first low blood count phase. I've gotta be careful this week not to get an infection. The nose thing isn't necessarily a problem medically, however, it is interfering with my sense of smell, therefore rendering me unable to differentiate my clean clothes from the dirty. I just took my temperature and I'm good on fever. My stomach is still totally weird from the vomitting last week and everything, but I ate 39 chicken mcnuggets this weekend plus lots of pizza and some chicken and steak. The chicken nugget thing is a weird craving...maybe I am pregnant...I bet lymphoma is bad for the baby.

This week I have to get my MRI, potentially score a spinal tap, and hopefully get into work back at the hospital to see my homies. Tomorrow I plan to get to my emails and I am going to start figuring out how much I am going to let this thing affect my day-to-day life. I will probably let it slow me down since it is going to make me vomit so much and I will let it take my hair and blood, but that is all. Who needs hair and blood?

Open bid to Junior Olympics!!

It was a pretty funny sight courtside today. I currently have some crazy allergies including a runny nose and horse throat, so I was yelling like a madman at my team. By the way, I buzzed my hair now, so I am "that crazy bald coach in the wheelchair over there". I am especially crazy because I am tired and on some hillarious drugs. I sort of rolled around all day up to random people and made conversation. I am waiting in Dallas in the hotel for my a couple players before we go get on the plane. I am fortunately going home in a really cool friend's private jet so I am going to lay down on the couch and not have to wear a mask.

Anyway, crazy coach or not, we did a very hard to do thing and won an open bid to Junior Olympics this weekend. That means my team of 8th graders will be playing with the top 30+ teams in the nation late in June. Worth the allergies and the ziplock baggy present I left my cab driver.

Tumoriffic playing from my City Beach team!

Well, coaching my kids is one of my favorite things to do, especially when they win. Today I managed to get wheeled over for a pretty exciting day. We won all of our matches, including a close one at the end of the day, with a huge pack of my friends and family watching. It was cool. I am now eating large amounts of pizza and feeling pretty well! My super-doc Kathy R. is really mad that I got sick from my chemo because she said it isn't supposed to happen. It's ok though, I think I'm over the hump. My leg feels really good and I want to walk on it but super-doc Kathy R. keeps me one track with the "no weight-bearing" orders from Dr. King.

Republic of Texas

Through car, through plane, through taxi, 8 hours or so of transportation, and I AM IN TEXAS!! That was one of the most arduous journies of my life. I put no food in my stomach, wore a mask on the plane, laid flat in the taxi. I was making it! But the taxi driver was my one weak spot...he had some pretty bad body odor augmented by some cheap taxi cab scent combined with his driving brought the worst out...fortuneately my co-coach Robyn Lewis had a ziperlock baggy for me to put my egg-yolk colored vomit inside. I quickly zipped it up, laid back down like nothing happened, and continued the ride. Now I sit in my hotel room eating some noodles and bread and soup and sprite and feeling pretty good. Got some good friends up from San Antonio (Chris, Tiff, and Curt) and we're chillin in my room. I can't feel any pain in my hip any more, so the chemo has hurt the tumor more than me already.

I heard back that my x-ray of my back "looked good", but I need to schedule an MRI of it still. Next week will be that, and I meet with my doc on May 1 to check my blood counts.

Done with my injections for first round

Last night I vomitted between 20-30 times. It was nothing like the college deep-sea fishing trip my friend Chris Cov. made me go on...probably vomitted 100+ times there. The "Law of Diminishing Returns" applies to vomitting, so any more than 10 vomits are dry-heaves. If you go to www.jasontrip.com you can see my picture hooked up to my first chemo IV. The clear medicine they are giving me in that picture is actually an anti-vomitting drug, which turned out to be useless to me. They give that to me first before the adriamycin, which they inject while sitting there next to me. If you click on that link, you can see that it is red. They follow the adriamycin with the vinchristine, and then the somethin-toxin. Those guys did their job, because I vomitted. The next four mornings I am then to take Prednizone by pill. That completes one CHOP treatment. They think my vomitting is done, but I am still worried it will come back. Vomitting is not as fun as you would think. Today I received my Rituxan with no complications, and they claim that there is no side effects that should happen from that after they get it in me. So I've got my CHOP+R, now I just wait for my body to wear down.

By the way, if you notice www.jasontrip.com is up with a picture and link to email me and a link to this daily blog. It has an easier url to remember and is a good starting point. I intend to upgrade that site a little more, and continue the daily blog for anyone that is interested.

chemo wins first night against jason and symbiotic tumor

Short post today. I have about 15 minutes until I vomit again. They gave me a suppository for it. A suppository is another item on my list called "things I never want to do in my life". Chemo is making me puke, but this means it is making the tumor puke, so that is good. I am staying at the Fullers' house and it is really nice having someone helping me. I will come out of hiding tomorrow for another round of chemo at the hospital.

fixed comment posting

Wow, everybody that posted up until now had to create a blooger account to post...my cancer was getting to my computer skillz obviously. Now you should be able to post comments without joining. You can click on "[#] comments", then on the right you can make a comment and select something else besides a blogger login. I am working on a couple pictures to get up on the website with before and after baldy shots. I will probably put the pictures up on my main website www.jasontrip.com, which has a link to this blog site right now.

Just to clarify my situation to everyone...I will be flying to Texas just for the weekend. I will be living in the Bay Area for at least all of the cancer treatment because I am going to be cared for by the best in the world at lymphomas. There is hardly anywhere else that matches it. That probably places me here for the next 5 years at least, because that is the time where we will be waiting to see if the cancer returns. I am not sure where I will be living yet. Right now I live in a studio by myself, which the doctor said would be completely fine. However, I am probably going to try to live with someone else. I have a good friend that wants to be a roomate; I also have offers from a couple ridiculously nice families to live with them. I am going to wait to see how my first chemo goes to figure out my plan to get through the next 3-8 months of fun. So many of you have offered help in so many ways, and I am thankful to all of you that have offered! I feel bad that I haven't gotten back to you, I just don't know what I need yet. I will likely have to take you up on your offers...I am sure that I cannot do everything by myself.

Radioactive Man

For the PET Scan today, they injected me with a radioactive chemical for the scan. I was radioactive for 4 hours after the procedure. They told me not to sit next to pregnant women or infants to protect them from my radiation!! That is so weird! And maybe being radioactive is bad for me? I guess not. After injecting me with the dye, they had me sit in a chair for an hour and I was not permitted to move so that the radioactive sugar substance could circulate everywhere and not get stuck in my muscles. Then I had to change into a sweet hospital gown that took me a while to figure out because it had three arm holes. My first thought was that it was made for someone that had a lot of radioactive chemical in them and sprouted a third arm. However, I figured out that 2 of the arm holes would be for one arm...I honestly tried it on my head though. Needless to say, the gown was too short and made me look like an idiot (not that having it any longer would help that much). It wasn't a fashion show though, I just had to get on this table and sit still for 30 minutes while it moved me into these two donut shaped machines. They were looking at my positrons from my guts.

The guts-positrons showed a tiny spot on my spine, which may be nothing (PET scans are notorious for seeing things that are not there), or could potentially be another tumor. So they sent me to get a back X-ray (I did ask if I it was ok to get an X-ray while I am radioactive...somehow that was fine). I may need an MRI to figure out what it is...then I may need a spinal tap. A spinal tap is another one of the things that I had on my list of "things I never want to do in my life". It is where they stick a needle into your spine and suck out cerebro-spinal fluid. They will check there to see if I have lymphoma in my central nervous system, because Lymphomas can sometimes "hide out in your brain". If the spot is a tumor, it puts me at Stage IV. The prognosis would then become slightly worse than if it were Stage I, but it is still relatively good. The treatment would probably be longer and harder if it is Stage IV, so, we will hope that the spot is just a milk dud that went down some crazy wrong tube when I swallowed it.

I am still on for chemotherapy #1 tomorrow, Wednesday. They did chemo orientation today, complete with a binder of information and a tour. It was like getting a new job...same kind of dread and same kind of overload of information that you may never need. One of the pages had a list of all of these horrible medical symptoms that I should call them about if I have them, but I "should never have them". Kind of made me queezy looking at the list. Turns out we do the CHOP first, that one is the one that may give me nausea (3 1/2 hours of IV). Rituxin Thursday (6 hours hooked up to an IV). Flight to Texas Friday. Wednesday, April 26, they predict my blood counts to go down and for me to get neutropenic, anemic, and grouchy. Then 3 days later they should be back up. All of my hair will fall out during my first chemotherapy cycle, so I think I will buzz it tomorrow night.

Chemo vs. Cancer, round 1 begins Wednesday, April 19

Unless the results of the PET scan are a huge surprise, I will receive my first round of chemotherapy Wednesday and Thursday of this week. Be careful with this paragraph, some is boring, so skim it, the next paragraph is better. My treatment plan will begin with 4 cycles of chemotherapy. Each 3-week "cycle" begins with the administration of the standard set of chemicals (affectionately known as CHOP+R) they use to treat anyone with diffuse large B-cell lymphoma. CHOP is a set of 4 drugs that beat my body to a pulp, but beat the cancer into oblivion. The additional R is Rituxan, which is a special drug that specifically targets B-cells. There could be complications the first time I receive the +R, so they will give me it to me on a separate day than my CHOP for the first cycle. So, Wednesday the +R, Thursday the CHOP. I believe about half-way through each 3-week cycle my "blood counts" will lower, both red and white blood cells, making me anemic and neutropenic. Anemic is when my red blood cells are low, and since they carry oxygen to my body, I will get less oxygen everywhere and therefore I will be tired. Neutropenic is when my white blood cells and neutrophils are low, therefore I cannot fight infection easily. After my blood count dips, it will rise again, only to be smacked around again by the next round of chemotherapy. I will have 3 or 4 rounds of chemo for sure, then potentially radiation or more chemo. This is a new development...I may actually only have 3 months of chemo in total, if things go well. 3 months is better than 6 months of it. The reason it may be so short, is that we are very likely in Stage I.

I'm going to go bald soon, so, I'm gonna buzz my hair the day I get my first chemo, just so I don't have hair all over my apartment (though it would make a nice rug). I'm going to start wearing beanies and hats and stuff (I already wear hats a lot), but I may just sport the skin just so people will look at me even more...they already stare at me in my wheel chair. I think it is really funny when random people ask me what is wrong and I end up having to tell them I have cancer in my hip and then they try to figure out how to respond to that...I guess I am evil for thinking that is funny. They say the pain in my hip will go away soon after chemotherapy begins, so, unfortunately, no more narcotics at that point. My next 3-8 months will be defined by cycles. Some days I will feel pretty well and I will be normal, and some days I will feel like I "got hit by a truck" (that is how one of the kids at the hospital described chemo). I'm ready to get this show on the road.

Positively Positron

Wow, that was a clever post title. Tomorrow at 9:30 I'll be getting my Positron Emission Tomography Scan (PET Scan). If you want to learn more about PET Scans, check this out. So, hopefully my Positron's will be pretty good relative to my Optimus Primes and my Decepticons (lame joke referencing Transformers, had to do it). They just told me I can't have any more carbohydrates today, and I am NPO ("not per oral"...no food or drink) starting at midnight. Tomorrow is the last piece of testing before they decide my stage and start my treatment. I'm still hoping we start chemo Wednesday, but I may have a second opinion set up at some point. Texas would be this upcoming weekend if I get to go, which I should.

My pain in my hip is actually getting better. I am taking steady pain medication, but I am pretty comfortable now and I have had two nights of over 8 hours of uninteruppted sleep. I am able to drive, and today I put my wheelchair in my truck by myself without much trouble, so I am pretty mobile. I think I'll be pretty independent, though soon I will be bald and in a wheelchair looking like Dr. Evil. The kids in the hospital (I work at Stanford Children's Hospital) that have cancer told me today that I probably won't loose my eyebrows until way later in the chemo treatments, but that I should probably buzz my hair soon because it will start falling out. Some of them also winced when I told them about my biopsies...that I was awake and that they stuck a huge needle into the front of my hip and I saw it...and I felt really tough since they have had some other pretty nasty stuff to deal with themselves. I told them that some doctors gave me like an 80% chance of cure, and one said "oh, it isn't even like you have cancer". Haha. These kids have way worse odds and way more hurdles and have overcome it, so now I feel like a huge wimp again. Today I will be sending my check for income tax and I have decided that the IRS is more of a pain-in-the-rear than my second biopsy.

special thanks

Thank you very much, to everyone that has emailed, called, and offered so much help. I have not been able to respond to everyone, but your thoughts and prayers do mean a lot to me. The best part about this diagnosis has been the realization of just how amazing all of my friends are. It is really easy to keep a great attitude when I get the kind of support that I get. I'd also like to let everyone know about a couple of the special people that have helped me in what has been one of the biggest difficulties of my life.

Dr. King is the first doctor that actually started down the right track to find this cancer. He was extra careful in his initial assessment of my hip. It really looked like a simple muscular problem, and many doctors could have easily let it go (2 already had). He ordered my MRI just to be safe, then quickly ordered my CT Scan which showed us the "moth-eaten" bone in there. And once we were on track, and after I saw a bone cancer specialist that told me it was probably just a stress-reaction, he called me the next morning and told me about a second opinion that he had set up for me on his own. He gave me his cell phone number and is available all day for any questions or concerns. It has been extremely reassuring to have such a reputable doctor personally involved in my case and I am very thankful for that.

Another person that I am extremely thankful for is Dr. Kathy Renschler. She got me a wheelchair when she saw me in pain coaching in LA (I coach her daughter). She is the one who looked at my records and told me that I should have my mom come out. She has spent countless hours on the phone working on my behalf to get me my appointments for the myriad of tests I had to do...she is not even my doctor. She has prescribed me some sweet meds, she ordered my wheelchair, calls me with my test results, and has watched out for me every step of the way. She has called me almost every day and apologizes for calling me so many times, because she somehow doesn't know that it is so reassuring to hear from her and that her constant calls have given me a sense of confidence that I am in the best hands I could possibly be. I just got a call from her in Florida, she is on vacation and still bugging me :) I will never be able to thank her enough.

And when Kathy said I should bring my mom out, I called home (Texas) on Monday at 3:00 in the afernoon, my parents and sister dropped everything they were doing and were at the San Jose airport by 9:00 the next morning. It is great to have that kind of steady support that I can count on. They were with me at every doctor visit through the diagnosis, even while I was admittedly cranky. It is funny how even when you're 28 it is still helpful to have your family there with you to hear the bad news. They head back to Texas tomorrow, but I know I have them on call.

bone marrow and CT scan negative!

The CT scan from yesterday showed no signs that the cancer was anywhere else, and more importantly, my bone marrow biopsy results showed that there wasn't any cancer going on in there either. So, that is great news and probably puts me at Stage 1. It is looking more and more that my cancer is just in my right hip bone. That is still a weird location for a lymphoma, but it is about that time to open up a can of chemo on it. I am hoping that Wednesday will be my first day of chemo, then Friday to Texas for the weekend.

got my bone marrow biopsy and ct scan

They took bone marrow out of my good hip (my left hip) using novocaine and a screw (and possibly other tools that I did not want to know about). It feels like someone kicked me in the hip, exactly like the doctor said. When they suck out the bone marrow that feels really weird. Now we wait a few days for the results to see if the lymphoma is in my bone marrow. Meanwhile, I now have two hurt hips.

For the CT Scan, I had to drink six cups of this orange liquid that was kind of like the badly mixed Tang. Then they injected me with a dye that made my body feel very warm and then they scanned me with the donut machine. We already found out the results. There were no lymph glands swollen, which is a good sign. Using this extra scan, they were not able to find the cancer anywhere else.

The PET Scan on Tuesday will look even closer for other places the lymphoma may be. We are hoping it is only in the bone right now, so we can stage my cancer at Stage 1, which helps the prognosis. I don't care about knowing how good the prognosis is too much because I have already seen how faulty some doctors can be on that. The treatment they give me will be the same if it is in Stage I or Stage IV. These extra tests are just going to give us a bunch of information to start as a baseline during my treatment. I am ready to get them to start the chemo so I can get closer to recovery...and hopefully closer to walking again since this stupid tumor is eating up my hip bone.

tomorrow bone marrow biopsy and ct scan

Tomorrow I have another biopsy, this time they are going to focus on getting out bone marrow from my hip. The results of this biopsy are going to tell us if the cancer is in my bone marrow, we already know that it is in my bone in a couple spots on my hip. If the cancer is in my bone marrow, they will "stage" it as more advanced. That would hurt the prognosis a little bit. The other thing I will do tomorrow is a ct scan looking for my lymph nodes. I can't eat anything for 4 hours then I'll get injected with a dye and they'll scan me with this donut shaped machine and that will tell us if my lymph nodes are swollen. Next Tuesday I have a PET scan. I think that also looks for swollen lymph nodes and stuff but now I am not sure of all of the details. Anyway, these should be the last tests to decide the staging of my lymphoma, which just means how far it has progressed.

The other thing they will consider is how weak my bone is. They might want to use radiation to fry the tumor, which would allow my bone to start growing back there and speed up when I can walk again. They would do this before chemo begins probably. Looks like we might not radiate though, so chemotherapy should begin mid to late next week (hopefully April 19 I'll get my CHOP and April 20 I'll get my rituxin). Then I am really hoping to get to go to Dallas where I will coach my City Beach team where we will win a bid to JO's and I'll see my brothers and friends back home in Texas, assuming they can make the drive up, but shoot, they better, I have cancer.

how I found my lymphoma

Early in March I decided to try again to increase my vertical jump and started using the Vertimax at City Beach, which is this contraption where you strap a belt around your waist, and attach these resistance bands on the sides that rapidly pull you back to the ground. I did the Vertimax 2 days (one day of rest in between) and a couple days afterwards I started having some pain in my right hip, back and leg. It kept me home from hanging out with friends because every evening it was really starting to hurt. I kept coaching though, and kept jumping around and all that because I just assumed that this was my first old man injury. I took some advil one time and played on it and that felt fine, except then again a couple days later it hurt more. I started waking up in the middle of the night with extreme pain, shooting down from my hip to my knee. I almost went to the ER a couple of times but toughed it out like a coolguy. Later I went to see the doctor at urgent care who x-rayed my hip and saw that it was normal so she told me it was probably muscular. Then I continued with horrible pain for a week or so, walking around and coaching until I saw another doc that told me it was muscular but then referred me to Dr. King (I coached his daughter a few seasons and he really looked out for me big-time) and Dr. King got me an MRI and then a CT Scan and a Bone Scan and got me on the track to research what this "moth-eaten" hip bone was all about. He also showed me that I had a stress fracture in my hip socket, so I should probably stay off of it. So, I went to crutches (donated by some cool friends at the hospital where I work) and that relieved a ton of the pain. A couple weekends ago, Dr. Kathy Renschler (I coach her daughter too) got me a wheelchair at a tournament we had in LA and that relieved my pain almost entirely. So for 2 weeks now I've been in a wheelchair and going to all kinds of appointments and I've had my parents in town and all that. Monday of this week I had a CT guided Needle Biopsy, which is where they stick a needle into my hip and pull out pieces of my bone and then they look at it under a microscope. They said that when it came time to get into the bone they only needed the biopsy needle to get in there (instead of a bone needle and some power tools)...the bone was just really soft from the tumor. The results came back Wednesday that I have Non-Hodgkin's Large B-cell Lymphoma.

Preliminary Treatment Plan

I have yet to meet with my oncologist and I still have to get some more scans and all that, so we have no sure idea what is next or when exactly I will begin treatment. However, most likely I will go through chemotherapy for about 6 months, starting in a week or so, and possibly I will have radiation to kill the tumor that is in my hip bone (acetabular cup and the illium).

The Chemotherapy would be administered as an out-patient procedure, so I will not plan on spending much time in the hospital as a patient (I do work at Packard Children's Hospital, so I plan to be there for that). There is a couple ways the treatment will affect me though:
1. I will go bald (this will be hillarious)
2. I will feel fatigued (hopefully I will overcome this and still be able to coach and work all the time)
3. I will be susceptible to getting sick when my white blood cell counts get lowered from the chemo (I will possibly wear a mask)

Radiation would just locally fry the tumor. This may or may not be done. Surgery is unlikely, so I probably will not be able to use my right leg as a lamp shade like I was thinking of doing if they had to lop it off.

Next steps for me are:
1. go to the oncologist
2. get a CT scan and maybe a PET Scan and maybe bone-marrow biopsy
3. "stage" my cancer...find out how tough and how far along this cancer is

Diagnosis

I was diagnosed with Non-Hodgkin's Diffuse Large B-cell Lymphoma on Tuesday, April 11.

If you've gotta get cancer, Lymphoma is a pretty good one because lots of people get it and it can be cured.

Good stuff about my prognosis:
1. It is lymphoma and there is a way to cure it
2. I am in really good health
3. My blood results were very good on a couple of tests (LDS or something like that)
4. I will be treated at a great facility, Palo Alto Medical Foundation Clinic, and I have a few doctors working on my behalf that know me personally and have already helped me more than I could have imagined
5. I have good spirits (they say that is a huge factor), I've always had pretty good will power so I can at least shoot the cancer down with mind-bullets

Bad stuff about my prognosis:
1. I have a primary lymphoma in my bone, which is rare
2. The lymphoma (tumor) is in my hip, which makes it tough to walk, thus the wheelchair