Dealing Daily with Cancer

Blogging Site Moved

2007-05-04T16:36:00.000-05:00

I've decided to change my blog to my own domain name. From this point forward, please bookmark the new location at the following address:

www.bvwilliams.com

For those of you that keep up with me via RSS, the new RSS address is http://www.bvwilliams.com/index.php/?feed=rss2 If you don't know what RSS is, then don't worry about this part.

For now, you can just click on the first link to go to the new location. Why bvwilliams? Although I go by Brad, my real first and middle names are Bradley Vernon.

Thursday, May 3rd

2007-05-03T15:06:00.000-05:00

Everything is going well today. I only had my white blood cell shot this morning along with a change of the dressing for my CVC (the place where they put the chemo directly into my chest) and then the rest of the day off. I'm still dealing with the rash, a few new sores on my legs and the sores in my mouth...although they are getting better. I get my new numbers tomorrow on my blood work so I'll post around lunchtime tomorrow once I have those. Brad

Tami Just Left

2007-05-02T19:10:00.000-05:00

Just returned from taking Tami to the airport. I hate to see her go but someone in this family has to make some money!! An old friend from Colorado is coming in tonight to stay until Sat morning so I'll be leaving in a couple of hours to pick him up from the other airport here in Houston. Oh, I've finished my last class for my masters degree. YEPPIE..done. I'm already bored and looking to see if I can go ahead and start that PhD I wanted to get going on this summer online. Naw, maybe I'll just rest a while. It's been a pretty good day. I'm very tired when going up stairs but other than that, I feel pretty good. I still have a rash from the last round of drugs that meds are taking care of but I'm just trying my best to ignore it. My next blood work isn't until Friday so I won't have more numbers until then. Tomorrow is just the shot to up my white blood cells. Thanks for keeping up with me and all of the support that you have provided our family.

Tuesday, May 1st

2007-05-01T09:39:00.000-05:00

We've just returned from the hospital and my blood work looks pretty good so far. It will start coming down today or tomorrow though for the next four or five days before beginning its rebound. The only issues currently are a new rash that just shows up at anytime and any place on my body from one of the most recent drugs. Benadryl helps but doesn't take it away. I've also noticed I get worn out much quicker this week than after the first treatment. The nurses said that is to be expected. I didn't sleep much last night but I'm not sure why. Hopefully tonight will be more restful. Brad

Back at Home

2007-04-29T14:07:00.000-05:00

I felt a little better Sat night and much better Sunday morning. I was released just before lunch today (Sunday) . I was even able to finish my big project for my last master's class before they discharged me YEPPIE. As Tami wrote, I'm not looking quite as good as I use to but that is to be expected when you start out so darn sexy...LOL The chemo is making my skin break out all over my chest, legs and head...not nice. This round of chemo was much harder on my body than the first round was. We don't know yet if it is due to one of the drugs or just the combination of all of the drugs. We'll know soon enough. I'm able to eat (although still not much) and keep it down so that is good. Brad

Hair,Hair Beautiful Hair-NOT!

2007-04-28T19:17:00.000-05:00

Hi all, this is Tami! I am finally here in Houston where my heart has been for the past two weeks. It is so nice to put all your body parts back together. They work much better that way. Anyway, thank goodness that Brad was feeling super lousy yesterday so that when I came in the door I didn't have a chance to really soak in his new look! I was just worried about how sick he finally looked. You know, he hasn't LOOKED sick through this whole process. Well...that has changed. His look has also changed. He has lost 30 pounds and about the same amount of hair. He still has hair but it is splotchy. It is falling out at a quick rate so maybe by the time I leave on Wed. night I will be with Slick Willy! He felt awful last night but was glad to see me. I spent the night at the hospital which means NO sleep. This morning he still didn't feel great and the drs. said he couldn't go home-much to my relief. (I was watching him trying to move thinking what will I do if he falls down!) So...they finally changed his nausea meds to something else and he went to sleep. I went to the apt. to unpack, shower, relax a little,etc. I came back a few hours later to find him feeling some better. Enough to want Chicken Noodle Soup! He ate, napped, napped, napped. Then he woke up feeling pretty good.....wanted to order spagetti....WHAT? He doesn't usually want spagetti on a GOOD day! Weird. He ate a little and had some Blue Bell Vanilla with M&M's on top. We actually took a walk down to the lobby just now. The massive headache was gone this morning and now that the nausea is better he feels much better. Not great, but much better. He does have a really low fever that they are watching but not anything more than 99 at this point. Oh, I am going to have to buy him some new shorts this weekend cause while we were walking he couldn't push the chemo pole and hold up his shorts. We certainly don't need to give the weekend entertainment here at MDA! All for now, pray hard and love to all, Tami

Must have had too many good days

2007-04-27T13:56:00.000-05:00

Today has been one of those days they tell you are coming. It arrived. Headache since I woke up that pain meds just can't put much of a dent in. The top of my head has a hard but dull ache and there is a place behind my right ear that feels like someone is just sitting there jabbing me. When I try and sit up, I throw up. No food in me so it's now more like dry heaves where you just can't catch your breath and but little comes out. The only thing that makes it better is knowing that Tami will be here in about four hours from wen I'm posting this. Dad and Betty left this morning. I had been fine the entire time they were here until this morning. I hated having them see me in such obvious pain but again, you know it is part of it. Here's hoping tomorrow is a better day. Brad

Thursday, April 26th

2007-04-26T11:07:00.000-05:00

Slept better last night. Still have this headache that I can't quite shake. I'm hoping when the current drug runs out around 2pm that it will get better. Thirty minutes later I start the last drug for this round. It is a two hour bag that I get four times over the next two days. It now appears I'll get out Sat afternoon at the earliest. After taking a shower yesterday afternoon, I was drying my hair with those white towels they have here. I noticed that it appeared the towel was discolored. After closer inspection, I noticed it was much of the hair that had previously been on my head was now in the towel. Oh well, bald is beautiful, right Heath? Bradley

Long Night

2007-04-25T10:20:00.000-05:00

Didn't sleep much. They had to check vitals every 15 minutes for a while, then every thirty minutes for a couple of hours then every hour. The really good news is that I didn't have a reaction to the rituxim that I did last time. My kidneys weren't ready to get the next drug so I had to take some other medication before I could start the next one. They've just hooked me up to the methotrexate that will last for two hours. Then I get the same drug from another bag for 22 hours straight. Not sure why they don't just give me a 24 hour bag but was told this is the way it is done. Tomorrow I start the Cytarabine which last for two days. I hope to be out Sat. Brad

In the hospital for round 2

2007-04-24T20:34:00.000-05:00

So I've just made it to my new home for the next five days or so. I'm actually next door to the room I was in last time so the area is very familiar to me. My main nurse from last time, Ashley, was here and seemed shocked to see me. She said it seemed like I was just here..not sure if that is good or bad. LOL Unfortunately she is off now until Sat. Hopefully I'll have at least some of the same nurses....they were all incredible. They make you feel like you are the only patient they have. That isn't too far from the truth. The way it is set up here, they only have three to four patients each. They really take the time (most of them) to get to know you and what you are going through. Several have taken the time to just come in and sit and visit. I've said it before but I'll say it again, this place is the BEST! I'm about to start the rituxin which is what broke me out so bad last time. They said that many people break out the first time but not each time after. I'm hoping I fall into that category. I'll be taking chemo through Sat morning around 11am. They'll test my kidneys to see if it is all out of my body before they'll dismiss me. We have to come back on Sunday for another short infusion of around 30 minutes. I'll then be back home (sorry, I mean my temp apt) for two weeks waiting on the dropping of my numbers and then the building back up in preparation for the third round. But before that is the BIG day..May 15th when I go through all of the tests again to see what reduction in cancer cells we've been able to get. That then determines the remainder of my treatment schedule. Again with the high level of bone marrow involvement I've had, they don't expect me to be clear of cancer but we're just expecting more than a 50% reduction. For those of you from Farine, don't send email to my school account for the next week. Something about the firewall here won't allow me to access my school account. Well, time for chemo. Here's to another smooth sailing few days. Brad

Another Good Day

2007-04-23T18:05:00.000-05:00

Felt good again today. Just returned from the hospital where they did my lung function test to make sure that I could handle the next round. The tech doing the test said I had one of the highest lung functions he had seen in some time and was really pleased with the results. I am off all day tomorrow to finish a short paper and my major project for my masters class..then I should be about done with it!!! YEPPIE On a strange note, I had a "fellow" (dr that is working with my main dr and trying to learn) that came in to me today when I was waiting on my main dr. You could tell he didn't really know much about mantle cell lymphoma other than it wasn't good. His comment to me? "You have the worst of the worst kind of cancer" REALLY? Ya think I don't already know that? Thank God there wasn't some fragile personality in there...they may have just given up. Me thinkst that thou needs to get some bed side manner, young man. I will be admitted around 7pm tomorrow and start chemo immediately. I'll have chemo Tuesday night, a different drug on Wednesday and then a different drug on Thursday and Friday. I should be discharged on Sat but then have to return on Sunday for another drug but that one is outpatient. I might be able to post tomorrow night but it could be Wednesday morning before my next posting. Brad

Good Day

2007-04-22T20:16:00.000-05:00

I was told by two of you that I shouldn't skip any days when posting so ....here is today's report. My dad and step mom are here and will stay until Tami gets here Friday night. I have blood work tomorrow afternoon with a lung function test but then it appears that I've got nothing after that until being admitted on Tuesday night. The only discomfort I have is abdominal but it isn't bad. My spirits are great and I'm still hanging on to some of my hair..but that battle is, well, being lost. I'll get more blood count numbers late tomorrow afternoon so I'll post again around 6pm tomorrow night. Man I miss being at school! Bradley

Sat Visit

2007-04-21T10:19:00.000-05:00

I just returned from my Saturday visit and my numbers are all good. The only one that has come down a little from where they want it is my red blood cell count is a little low..but not bad. My white cells are still good and my platelets are doing wonderful in the 181,000 range so far. Today is going to be spent getting my last big project done for my master's class and to get caught up on some reading for that class. NASCAR is tonight and as long as Tony Stewart doesn't pull another bone headed move maybe I can enjoy watching Jr. do some good tonight. As you can tell, I feel pretty good today so far. Dad and Betty are coming down tomorrow and Tami should be here on Friday. I heard the tournament was a wonderful success. Many thanks to Aristo for all of his work...I still wish I could have been there with you guys but then I'm sure I would have done something stupid like try to hit some balls and ended up messing myself up. So for now I'll just concentrate on dealing with the chemo and trying to do what they tell me. Signing off for now Brad

More Details

2007-04-19T19:29:00.000-05:00

I met with my main cancer dr this afternoon and found out some more information. First off, he is very happy with my progress. Everything appears to be heading in the right direction but there aren't any test to show that yet so that doesn't mean much yet. I have a full day of tests on Monday to make sure I can handle the second round of treatment and if so, I'll be admitted Tuesday night to start round two. That will be a shorter four day stay and should be out by the weekend. Once that round is over (May 15th), I'll have all of the tests repeated to see if the cancer is still around. If ANY cancer cells are still found, I'll be required to complete all eight rounds of treatment which is Sept 18th OUCH!! Although the doctor feels that it is possible that all of the cancer could be gone by May 15th, he doesn't feel it is likely with as much bone marrow involvment as I had. As long as there is at least a 50% reduction in cancer cells, they will continue treatment. If there is less than a 50% reduction, then he says it isn't working and we switch to something more aggressive...??? HUH, more aggressive than what we are doing? I somehow failed to ask what that could possibly be. I've posted a new pic at the top of my new hair cut. The hair finally started coming out yesterday so I had it cut very short today. Hope everyone has fun at the tournament tomorrow...man I wish I could be there. Thanks to my sister Cheryl who just spent the last few days with me...painful wasn't it, sis? I'm by myself this weekend so keep your fingers crossed that there are no reactions....but I feel fine so all should be ok. Bradley

Was Hoping to Come Home

2007-04-18T14:56:00.000-05:00

I didn't write yesterday because I thought I was going to be allowed to sneak home for the weekend and wanted to surprise everyone at the golf tournament. It didn't happen. My numbers shot up today...so much so that they cancelled my last white cell shot. They kept telling me these shots hurt your back and hips but my pain had been minimal at best. That is until yesterday. About three hours after my shot, my back, hips and legs began to ache to the point within about thirty minutes I had to head home, take one of the few pain pills I've ever taken and lay down. I found out today why. Friday my neutrophil I talked about was 160 when they want it over 1000 to let you out in public...it has something to do with the measurement of how your white blood cells are growing in your bone marrow. Monday my number had jumped to 940..pretty good huh? Today they were 11,480! They said at some point your bone marrow just doesn't have any more room and it is like putting 6 cars beside each other on a two lane road...it doesn't fit so it hurts. My white cell count that had been around 800 Friday, 900 Monday jumped to 13,500! Needless to say, my body is recovering. Anyway, they are changing my schedule and I thought I was getting the weekend off. Turns out, they want to watch me still because they say I'm going to start coming down fairly quickly and want to make sure I don't come down too fast or far. So, I'm staying here all weekend. At least we now have cable and I've got three weeks more of my master's class (my final one to graduate..YEH) that can keep me busy. My hair has finally started to come out. So, tomorrow I'm getting most of it shaved off. Not completely down to Mr. clean just yet, but very short. I'll post pics afterward. Weight remained the same for once..No weight loss for the fist time in 10 days. We are still on schedule to be re-admitted on Tuesday or Wednesday for round two. My dad and step-mom are coming down Sunday to stay with me a few days and then we have some friends that are set up for a day or two each until Tami can get back down. Enough for now...I'm still very upbeat although am certainly dealing with more of a pain level than before. I'm very sorry I can't make the golf tourney...I was so looking forward to that surprise but they seem to be a little unsure about me making the trip so we aren't going to mess this up this early by doing anything stupid. Take care and feel free to write. Brad

Good News Keeps Coming

2007-04-16T13:07:00.000-05:00

Just returned from my "fast track" appt where they do all of the blood workup to see if your body is still killing cells or if you are on the rebound starting to increase your white cells, red cells and platelets. I was down very low on Friday and they said they hoped I might start rebounding by today. My numbers are as follows from Friday to today...white cell jumped from 800 to 1,900. Red cell stayed about the same but is just barely low. The big thing is what they call Neutrophil assolute count which tells you if you have to wear the mask and can't shake hands or go to public places too much if at all. They want that count at 1,000. On Friday I was at 160 which is very low. Today I jumped to 940!! I'm continueing to walk as much as possible and although I get winded easily, it feels very good. The leg cramps have stopped. I have two more white cell shots the next two days and then on Thursday the dr advises me on when he thinks my body is ready for round two of the in hospital big guns. Thanks for your prayers and cards...it keeps us going. Oh, forgot about the weight. I'm down another two pounds today for a total of 26 since last Monday. A little fast maybe but hey, I'll take it. There is also a new video up but it is showing as the second one on my bar..it is the one with the red/blue shirt. Not sure you can tell, but my face seems to have lost half of the total weight so far. Bradley

Sunday Morning

2007-04-15T07:27:00.000-05:00

About to head to get my while blood cell shot again. I feel pretty good for the most part. The chemo I rec'd yesterday made me a little groggy most of the day (actually, it's the stuff they give you with it to ease your stomach) but all in all, I just rested more. My blood sugar is back up but that is due to starting back on the steriods yesterday. It was 223 last night but down to 212 this am. In the hospital it got up to 303. They say it is only temporary while on the steriods and I only have today and two more days this round of them. Right now, my schedule shows I start round two in the hospital this Thursday but that must be an error...I've written them to check. I should be going back in a week from this coming Tuesday but that is round B which is only a four day stay. Tami is driving back to Dallas today and I'll miss her greatly..but she needs to get back to make some bucks and to get her sanity back from taking care of me. My sisters are taking turns over the next week and then dad and betty come down for a while before tami heads back in about 2 weeks or so. I'm now down 23 pounds in less than a week. What a plan! I'll do a video later today but last time it took almost 10 hours to show up on here. Enough for now. Feeling much better than expected but also prepared for more "Hell Tuesdays" if they come. Brad

1st day as a resident of Houston

2007-04-13T22:39:00.000-05:00

Brad's being a wimp so this is Tami. Not really, Brad is being a trooper. It is just late and since I am not in treatment of any sort I can't seem to go to bed as early as he can now! Last night was our first night in the new place. Old place that is. This apt. had to have been built in the 70s. Under the coated countertops I can vaguely see avocado green! Obviously, the builders in the 70s thought people or furniture or something was much bigger than builders today think. This place is really nice and big-lots of big closets, big rooms,etc. Maybe that is because we just came from a 10 by 31 residence in the trailer. This morning I get up at 6 to start getting stuff out of the car. I open the front door and I can't see a thing. It is pitch black in the hallway. The stairs are dark. The elevator(which Katie will NEVER ride) wouldn't open up. Hmmmm....I am thinking, man, this place must be really safe if they don't need lots of lighting. Once I figured out where the stairs were and made it down them, I noticed that there were lights on the first floor. It was already raining so no point bringing stuff in. We drove the 5 minute trip to the hospital...neighborhood traffic only...praise the Lord! Drove the 20 minutes in the parking garage looking for a space that I could fit the bus into and then made it to Brad's first appt. of the day. His numbers were LOW but that was to be expected. This is day 10 out of chemo and it was the low day, so now the numbers should start going back up. "Numbers" refer to white blood cell count, hemoglobin, neutriphils, and platelets- I think. They say Brad's are where they are supposed to be so no worries there except for keeping him infection free right now. We actually got mail today...that was fun. I am making a board for us to keep cards and letters on, so if you want to make it on the board-send us a letter!!! I know that Brad and I will read and read the notes just like we do the responses to the blog. I am going to Mom's to teach again and be "normal" for the next few weeks while Brad is being babysat by his sisters and then his dad and step mom. He will be in good hands since the sisters are nurses. Cheryl comes first and she is a baby nurse(NICU) so she might have issues with his nightly temp. taking event. I would like to see her try her usual method of taking a temp with her baby brother! Then Vickie, she is a CCU nurse, so he will be in good hands there too. Dad and Betty will just spoil him rotten so then I get to come back to a real baby!!! We actually got some time to relax tonight and I got to go to a "SAFE" grocery store so we have some food in the house. You should hear the non-safe grocery story! Let's just say southwest Houston is not like any place I have ever lived. Well...should go. Brad has another chemo in the morning. Just a 15 minute infusion of the red Kool-aid stuff. Brad was freaking cause after the last infusion, stuff was coming out that was red that shouldn't be red. They said that was normal. Dr. even said that if he cried, his tears would be red. I am hoping I can make him cry tomorrow. I want a picture of that. Can you imagine that you tube video? Thanks again for keeping up with us. It is going to be another long 5 months but one month is already over. I really can't believe it. In some ways it feels like 3 years, but in another way it feels like 3 days. Keep praying, writing, blogging and laughing and crying with us. Love to all, tami

Homeless No More!

2007-04-12T17:53:00.000-05:00

The church group that helps people going through cancer find short term housing called this afternoon with an opening. We quickly went to meet them and signed the paperwork. It isn't fancy or new but it is a very large one bedroom apt that will work very nicely. There is a shuttle to the hospital for a small charge (ok, it is actually a full size trailways bus) and the complex is so large they even have their own small convenience store built in. Tomorrow is a longer day at the hospital but as soon as that is over, we'll begin moving. There is a phone already in place and as soon as we have that number, I'll post it. Maybe our cell phones can breathe for a few days. I've felt good today..not as good as yesterday but good. So far since Sunday I've lost 18 pounds. That is too fast. I'm drinking plenty of fluids but not eating much. Food still doesn't taste good but is getting better. Tomorrow I find out all of my blood count numbers. This is supposed to be my "worst" day when I might have a transfusion. I don't see it but we'll see. Until tomorrow.... Brad and Tami (from our last night in the trailer)

New Video

2007-04-11T17:37:00.001-05:00

It wasn't showing up on the video bar so I thought I would try this. Just click it twice and it will start.

What a Difference a Day Makes

2007-04-11T11:56:00.000-05:00

Today is SO much better than yesterday. No throwing up yet, plumbing is working (LOL) and my chemo head is not spinning as fast as it has been. I was telling a lady at the hospital today that I felt great! She just laughed and said "compared to what?" Ok, true. I've now dropped 11 pounds in two days. This chemo taste bud thing sure puts a damper on Dr. Pepper and snacks. It all taste terrible. The nurse is having me drink Gatorade just to make sure my electrolytes stay stable. We have an extended stay/suite reserved now starting Friday until my next hospitalization that has a shuttle. We hope the church apt people get us in before then but at least we now we have a decent place (we stayed there one night a couple of weeks ago and really liked it) to stay. We continue to be amazed at the kindness of people both here and away. People can be incredible. Tami told me to be sure and mention how perspective changes with the way you (I) feel. Yesterday nothing was coming in place and it all appeared to be falling apart. Today while I'm feeling better, everything seems to be falling into place. Coincidence? Don't think so. I'm going to record another youtube today...while I'm feeling good so that should be up shortly. Thanks again for all of your support. We send all our Love! Brad and Tami

Remainder of Tuesday

2007-04-10T19:24:00.000-05:00

The posting I wrote this morning was just as we were leaving to go to the hospital. As you could tell, I didn't feel good. I ended up throwing up twice in the car on the way (thank goodness we had more clothes in the back of the car and trash bags in the car). If you don't want more details, skip this part. The chemo puts most people in a real constipation situation and I'm no different. That along with your while cells coming down which provide you protection and the red cells crashing this week which is your energy, you just feel more and more worn down. I sat in the dr. office today at the hospital throwing up, then sweating, then shaking and then starting it over again. Fun day. I have to keep my eye on the end....it will get a little worse first but it will get better. On the good side, the pain hasn't been quite as much as I expected..yet. Housing. Things have changed again. As those of you that know me personally know, I'm a big guy. At the time of hospitalization, 6 ft tall and 338 pounds. The trailer is very uncomfortable for me..nothing fits and what does hurts. The shots they are giving me each day make your hips and back hurt (nuepogen?) and when you are my size trying to rest all day on a trailer mattress to begin with, it just makes it worse. We called the church group down here that subsidizes apartments and it appears we can get in one within a couple of weeks. We just have to get a hotel until one comes open. They are a little expensive but not terrible. We have to be out of this trailer on Sat and then if there is no apt yet, we'll move to a hotel for a few days.

Not a good day

2007-04-10T07:30:00.000-05:00

Sorry but today won't be filled with humor. Yesterday wasn't a good day, last night was not that good and this morning feels yet worse. I can't get comfortable in this trailer where I'm bigger than any mattress or couch. Tami is going to look today and see what is out there that is affordable....the church sponsored apts only let you stay three months so we'll have to do something else. I hate to do it but the trailer just isn't going to work. Pray that we can find something affordable today so I can get some rest.

Out of the Hospital

2007-04-08T13:18:00.000-05:00

We are in our temporary trailer just south of Houston. My spirits are still high buy my body is beginning to feel the effects they warned us about. Exhaustion, pain in the legs, upset stomach and such. So far, it isn't too bad. The picture I just put up is from this morning as I was being discharged. Yes, I have to wear lovely face mask pretty much for the next two weeks but not the silly duck one's. Katie just wanted us to do that since it was Easter. For those of you trying to access my youtube, it is under ntbradv and not ntbrad. I wasn't able to upload from the hospital but can from here. We can also rec'v school email again so that is good. Time for a nap so until later, thanks again for your support and we continue to fight. brad

News coming fast and furious

2007-04-07T11:33:00.000-05:00

sorry about all of the post this morning but news, news, news. Dr. just came in. I may not get to go home tomorrow. They are a little worried about my fluid retention. They are putting my on some more of that wonderful "pee like a horse" medicine today. The other problem the fluid does is make my heart work harder and my blood pressure fluxuate too much. That is why the dr. says my numbers keep going up and down. Here is the better part of the news. Those nodes in that were so large in the front of my neck (all four of them) and the two that were sticking out of the back of my neck are completely...as in TOTALLY GONE!. Till we get more news which today may be very soon. Brad

more about the family

2007-04-07T11:13:00.000-05:00

An hour after posting about my aunt passing away, Tami just called to say her mother had two seizures last night. Good thing we have a strong family. I hate that Tami has to be so far away from her but we've got too much that has to be done in the next day or two that I can't do from the hospital room. Brad

More Hardship for the family

2007-04-07T10:36:00.000-05:00

So I just rec'd a call from my cousin Bobby that was working on the trailer...his mother just passed away this morning. Vivian was a wonderful woman that had been dealing with heart troubles for many years. Thing is, Bobby was trying to figure out a way to take care of us...Lord, what a family we have. I had to tell him to get to his father and take care of them. We'll figure something else out. I immediately started looking at the list they give us here and found a trailer park that is a little farther out that rents trailers that are less than a year old by the week. Tami is heading out there now to look it over. Tami will then head to the one we were going to use and see if they have something else coming open next week. It's never easy, is it? Say a prayer for Bobby and his family. His father, Tracy, has been quite an influence on my life just in the way the man has taken on challenges that would have brought down many a man but seem like nothing but a bump in the road for him. This bump will hit harder and I hope that Tracy can learn what I've learned, there is no shame in relying on the others. Vivian, you'll be missed! Brad

Sat Morning Update

2007-04-07T07:43:00.000-05:00

I actually slept ok last night in between all of the nurse's visits. At least I could go back to sleep when they left which doesn't always happen. My blood sugar was back up again last night to the 250 range so more insulin. Blood pressure seems to be back to normal along with pulse. The dag gone hick ups seem to be causing me more problems than anything else and I don't mean the kind you hear from kids at school. I mean every five seconds ..hard one's that last for an hour. The do have medicine for it but since it takes about an hour too, I'm guessing they are sugar pills. Tami just called..her and Katie stayed at a hotel last night. Katie has been up since 3:30 sick so now we aren't real sure what to do with her. She can't be around me, doesn't want to be left alone but Tami has to go set up the trailer as soon as it arrives this morning. She said she was around some of her boyfriend's family the last few days that were sick...guess she is learning that lesson. If she is around anyone sick, she simply has to cancel a trip to see me but I know how bad we wanted to see each other. Unfortunately, the stakes are too high to take chances. I have chemo here again 9 -12 then I have the two parts of the Hyper CVAD that I haven't had yet during the day today and then the 9 - 12 midnight again with the last Velcade at midnight. Then, I'm DONE! I go home in the morning. MEDS, MEDS, MEDS. Yesterday they brought me a list of 18 prescriptions that we'll be leaving here with for the next two weeks until my next hospitalization. Now I don't have to take all 18 every day but there are some that I have 5 - 10 each per day too. They are having me come back to the hospital everyday now to take two shots. One is one per day and one is only once during the two weeks. The every day shot is $200 and the one time shot is $4,500 AlONE every three weeks. The said that if I come back in the hospital to have the shot it is covered under the hospitalization bill which I have finally reached my out of pocket maximum. We get our RX bill later today so please pray for something we can pay for. We have no idea what to expect. One lady we were behind the other day was expecting to pay a couple of hundred and when they totaled her bill up it was something like 3 or 4 thousand dollars. I'm making videos for youtube but we can't access youtube from the hospital so I can't post them until Sunday some time from the RV Park. Thanks again for your prayers and support. We are doing great and ready to keep going. Oh, for the two of you that requested RSS tags ( most won't know what that is) I've followed the directions to have it changed to that but you can let me know if it worked) Brad

Discharged Early?

2007-04-06T08:37:00.000-05:00

Dr. just came in and said everything looks great and I may get to leave Sunday morning. That would be a least 24 hours earlier than they expected. There have been some small challenges that I'll detail here for those of you that are medical people including both of my sisters that are nurses and Teresa from school. My blood pressure which is typically a little lower than most people has been a little bit of a concern. It is staying around 108/60. My pulse dropped last night from it's regularly high 90 down to 60. With all of the steroids that they have me on, they would have thought my pressure would go up but it has gone down. They said it could be due to the anti nausea medicine they have me on and aren't worried too much about it. They also said that my weight should be going down. I'm not eating half of my meals but I've gained 4 pounds here. They seem to think it has to do with all of the fluids they are pumping into me. Today's schedule is chemo here in a few minutes for three hours, then again tonight from 9 to midnight. Other than that, it is wait for my Katie bird to get here around lunch. The area on my face and head that had broke out so bad are almost completely gone. The nodes that were swollen in my neck are still swollen BUT HAVE GONE DOWN IN SIZE ALREADY! That's it for now. Keep writing....I love reading your comments. If you want an email response, just leave me your email in your post and I'll be happy to...Lord knows I have time. Bradley

Good Day

2007-04-05T17:43:00.000-05:00

I've handled the chemo drugs very well today. I had CYCLOPHOSPHAMIDE from 9pm last night till midnight. Then at midnight they gave me the 3 second shot of Velcade. From 9am - noon I rec'd my second dose of Cyclophosphamide. I've also been given Mesna to protect the kidneys along with something that makes you pee like horse every few minutes. All of the steroids I've been receiving have caused my blood sugar to go up which they expected and so I'm now receiving insulin but they said that would stop when the steroids stopped. I will get the next dose of cyclophosphamide at 9 tonight and then again tomorrow at 9 am. The next dose of Velcade comes tomorrow night at midnight. I've been up walking around the hospital today and feel really good compared to what I expected. Katie is flying in tomorrow for the weekend and I can't wait to see her. We miss everyone but KNOW we are in the right place to get taken care of. Bradley

2nd time is the charm

2007-04-04T20:32:00.000-05:00

It finally worked without causing the whelps, so now we are on the way to the really toxic drugs. Those should start around 9pm and go until 12. At 12 they infuse him with the expermental drug which we found out today is a 3 second infusion! Then I did some third grade math to figure out that not even a whole minute of this drug infused over 6 months is why we had to move here! WHAT? They have promised us that as soon as we are done at 12 then they will leave us alone until 6 so sleep can happen! I have never been so excited to sleep. t

Minor setback

2007-04-04T10:27:00.000-05:00

Hey all, this is Tami. I am not sure what Brad meant about my bed being so comfortable here. Sleep was a little crazy last night. We slept for a few hours before the chemo began then someone was constantly in here. His night nurse was a gentleman that could have been doing stand up comedy. He was hilarious. Although it felt a little silly to be laughing at 1, 2, 3, 4 and then 6 this morning and every thirty minutes between! The minor setback occurred this morning when they bumped up the dosage of the Rituxan. They know that most people have some sort of reaction so they slowly put it into your system and can monitor the progress. At the 50 ml level he was doing fine, they bumped it to 100 ml and after an hour of that he started to break out in whelps all over the trunk of his body. They quickly came in and pulled the plug on that amount. They gave Benadryl through the CVC and it went down quickly. Nurse said that usually you have one reaction and it can vary from patient to patient. When he went through this list of possible reactions, it sure sounds like Brad got one of the best ones to get! The team of drs. came in, took a look and said we are ready to go again. I feel so much comfort in being here. Since this is ALL these people do they are very involved, educated and totally care about Brad (and me) during this whole process. For those of you keeping up with the Beemer to Black Bus issue! I drove it through the parking garage last night for the first time. It was a little freaky cause I was sure the top of it was going to hit the concrete beams but once I found out it wasn't I was ok. Then came time to park. Realized I probably shouldn't try a right hand straight in place at this time. Quickly I found a left hand at an angle spot which was perfect! Having the entire car full of boxes that we are moving into the trailer on Friday, it looks like we are camping here at MDA. Thanks for all who are sending notes and messages. Like Brad said, we read them over and over again each day. It sure helps to know we aren't alone in this scary thing. Pray hard and love to all, tami

WE ARE IN!

2007-04-03T20:21:00.000-05:00

We are now in our home for the next week. Room G974 at MD Anderson in Houston. I got to admit, if I didn't realize how sick I really was, this would be kinda neat. We start chemo prep drugs around 10 pm and the real stuff around midnight. They said they have to check my vitals every fifteen minutes the first hour, every thirty minutes the next hour and then hourly for the next six hours. Sounds like the first night won't be very restful. If you want to call, we can't even have cell phones on while staying on this floor but you can call the room direct. The number here is 713-834-8936. Tami or I should answer unless we are out walking. They really challenge you to get out and walk the hospital as much as you can stand. They would like three miles a day!! I'm still waiting on the results of my blood clot test so I'll have to post those results later. My uric acid that was double the desired rate (typical for lymphoma patients) has been reduced by 1/2 after five days of meds and is back in the normal range. That's it for now...chemo shortly. Oh, Tami does have a very nice murphy bed in here that has more cushion than the bed I'm in so she'll be just fine. Till tomorrow Brad

Finally It Begins

2007-04-03T17:23:00.000-05:00

We were just told we have a room beginning tonight on the 9th floor which is the main lymphoma floor. The room does have a murphy bed that comes out of the wall (much nicer than you are imagining I'm sure) and we should begin chemo tonight. Today was filled with more test. Gave blood twice, had a dopler scan for a blood clot that we are still awaiting results on and did a fine needle aspiration on several lymph nodes. That last one was something I agreed to for research and wasn't to help me. About 1/2 way through it, I was wondering why I offered to do that one. They ended up using 6 needles on my throat and neck. Each one they push back and forth (in and out) for about 30 seconds trying to get enough cells. Most of the time it wasn't too bad but one of them hurt like &*(%!@ Well, we are off to admissions to get our room assignment. Back later. Brad

Pushed Back Another Day

2007-04-02T16:31:00.000-05:00

We were just called and told tomorrow at 11am. That really means we'll probably be admitted around 5pm or so but we'll see. Changes are coming faster now. Beginning yesterday afternoon, the pain levels increased quite a bit. It still isn't really, really bad..just bad. My forehead, face and neck are really breaking out. One doc says it is tiny staff infections and one doc said it could be from the internal tumors. Either way, we hope that just a few days of chemo will kill it all. The other thing that is changing is the nodes in my neck are beginning to grow faster to the point where you can't help but see them as a swollen area on both sides of my neck in the front. They aren't painful, just increasing in size. The one on the back of my neck that has been there for more than two months hasn't grown a bit. Well, as you can tell, we are very eager to get started. We were able to see Norma and Bill today and talked with Syndi. It sure does help to visit with folks going through the same thing you are. You wish they weren't having to go through it, but it helps to be able to visit with people that understand. Trailer is coming Friday. I've posted my new address at the top of this page. I normally only do email but snail mail might be a good friend. I have a feeling I'll be so bored when out of the hospital that I'll look forward to even reading junk mail...but feel free to send a real letter (if anyone remembers what those are) if you have time. I heard the blood drive at school today went off very well. Thanks to everyone involved. We continue to be amazed at the outpouring of love that is sent our way. Brad

Quote from Myspace

2007-04-01T12:27:00.000-05:00

I've rec'd a couple of request to post something here that I posted on my myspace page when I was first diagnosed. I was also asked if I still feel the same way I did then. The answer? More so now than ever. I know many of you aren't myspace nuts and so didn't see this...so, here is what they've been asking me to post here. God is good, all the time...and all the time, God is good. When I tell people that it is ok....God will take care of me, I think many of them are confused. Mostly it is people that either aren't Christians or they profess to be but really have no concept of the word. When I say God will take care of me, that doesn't mean that I know 100% for sure that he'll heal me. His Word never says that. It does say that he'll never leave us nor foresake us (see second half of Hebrews 13:5) When I say God will take care of us, I simply mean that we'll feel His love and the love of others he sends our way. Christianity was never promised to be a bed of roses, quite the opposite in fact...you'll be tested and tried. But His love will embrace us and help us fight the good fight. How people that don't have that faith ever make it through something like this is beyond me. To rely on my own strength for this seems rather silly. In His love. Brad WOW! How God has shown this to be true just through this first month is nothing short of MASSIVE!

Light the Night Walk

2007-04-01T08:04:00.000-05:00

My niece, Randi Hartin, has created a web site for people who are interested to sign up for a walk to raise awareness for Leukemia and Lymphoma which will be held on Oct 21st at SMU in Dallas. I certainly plan on making it and walking along side anyone that can join us. If you want more information or would like to join our team, go to the link below. The team name is Git-R-Done. For those of you that don't understand that one, remember that I'll be living in a trailer park and maybe you'll get it...uh, git-r. http://register.lightthenight.org/LTNRegistration/app?page=TeamView&service=page&urlKey=teambrad

Heading down to Houston tonight

2007-04-01T07:49:00.000-05:00

Today we are trying to finish packing everything I have to take with me to Houston and everything that Tami has to take to her Mom's to live there when she gets back in two weeks. Tami will stay with me during this hospital stay for a week and then the first week we are in the RV park (sounds nicer than the trailer park). Then I'll have different family members and friends taking turns staying with me a couple of days at a time. (if that duty sounds fun, I'm sure we can sign you up!) The Dr. is pretty insistent that I'm not alone since there is a good chance I'll develop at least one of the problems associated with this chemo and have to be brought back in. We got the sports car traded in yesterday. We went from a small bullet to a bus as Tami calls it. We really wanted a CRV they had ordered for us (2003) but it didn't get here in time so we had to pick from what they had. Since we were only willing to go down in price from what they gave us on trade, we ended up with a 2001 Ford Expedition. Very nice car but it is big. The nice thing is it is very comfortable for me to spread out in for those trips and we were able to get a three year warranty and still come out several thousand ahead. That will help. Tami will be driving that down tonight and I'll be driving my 89 chevy pickup that should fit in just fine at the trailer....uh, RV Park. Oh yeah, about the cancer and how I'm feeling. We moved some clothes last night to Tami's mother's house. I was shocked to find that just picking up a few clothes that were on hangers really caused me a couple of hours of fairly high level pain in my gut. (the dr's word, not mine) It is so difficult to feel useless. I had to sit there last night and watch Tami bring the clothes in. That would normally be fun to do if it wasn't for the circumstances. The pain made it difficult to sleep last night but I just kept thinking that a few days after we start this chemo, that should already be going away if the treatment is working. Well, back to packing and some of our school work since I need to get a couple of weeks ahead in my master's class. Lastly, to all my friends and family that came to the dinner at Farine Thursday night...WOW! When it was all counted, the final amount was approximately $6,000!!! Thank you, Thank you, Thank you. That will buy a lot of pink flamingos for my trailer lot!! Bradley

GREAT NEWS!

2007-03-30T18:06:00.000-06:00

My Dr. just called and Cigna has approved the drugs. He read the email to me and it said something about no precertification for the drugs but they did require a precert for the inpatient but he seemed to think that was typical and no big deal. So, we are on!. He wants us there Monday after lunch and we'll be admitted either Monday afternoon or Tuesday morning. Also, the new drug arrived today and is ready to go. Thank you for all of your prayers and support. It looks like, baring any unforseen challenges, that I will be be the first to rec'v this type of treatment in the U.S. in less than three days. Acutally, in talking with the Dr. at MD Anderson, no one anywhere in the world has tried this exact combination of drugs so this should be interesting. The Dr. also asked for permission to use a new technique to determine if I'm in remission earlier than CT scans can detect. I told him not a problem..be my guest since the hospital is paying for it. Well, the next two days are filled with packing the apt, getting a storage building, trading in the car on an SUV and somewhere in there trying to get some rest so I'm ready to go Monday. Ha! Life is worth living and I choose to fight. Thank you to all of those who have chosen to participate in our fight in so many different ways. It makes it that much easier for the three of us. Bradley

Blood Drive

2007-03-29T19:31:00.000-06:00

Lisa at our school asked me to post this on here so everyone could see. It's a blood drive at our school to help offset some of the cost we'll have for all of the blood and platelets I'll have to have over the next few months. My understanding is you can go in to any Carter Blood Donation center and give as long as you have my information and it is possible you can go into other locations as well, I'm just not sure. Anyway, if you are in Irving and would be willing to help, this is a way to do it. Thanks again for all of your incredible support. Brad Williams, 5th grade teacher at Farine, is fighting a very rare cancer and currently undergoing intense treatment. Every time he needs platelets/blood, he is charged a fee. However, there is a program that every time someone gives blood in his name, he receives the credit for it and the credit can be applied every time he needs the blood/platelets. Farine will be hosting a blood drive this coming Monday, April 2, 2007, at Farine in two mobile coaches provided by Carter Bloodcare. Four people can be seen every 15 minutes. The blood drive will be from 11:00-6:00 pm. If you can help in this way, please contact me and I will sign you up for a time slot that is convenient for you. With your Principal's permission, you may even be able to come during your planning period/lunch and/or after school. Many of you may know his wife, Tami Williams, who is also a teacher at Farine. Please come out and give "Blood for Brad." Thank you all for your support! Lisa Molinar Assistant Principal Farine Elementary (972)261-2700 http://owamail.irvingisd.net/exchweb/bin/redir.asp?URL=http://www.irvingisd.net/~lmolinar

2007-03-29T17:22:00.000-06:00

Wow, to keep up with what is changing from minute to minute, I need to carry a PDA to post to this thing. Here is the latest. I should have already been in the hospital by now, but we aren't. The new drug that was just approved to put with my Hyper CVAD, really isn't quite ready. There are still a few signatures needed to sign off, something they call an activation that takes 24 hours, and as of today, the drug had been shipped but not yet arrived here. So, I had to make a decision today and it was easy. Go ahead and start the regular high dose treatment that is good, or wait a few days and hope to get in the new super drug study. I chose to wait. Although the doctor said my cancer is aggressive, amazingly some of the key indicators in my blood count actually IMPROVED since last week with no treatment. He showed us the actual pics of the nodes and some are very big. There is one up against my aorta that is 5.2 cm big. They are a little concerned about that one but not much. Not too many others in my chest but the main concentration is in my pelvic area and in my neck. Lots in both places. My bone marrow is 60% involved on the right and 50% on the left. The only bad sign in my blood work is my uric acid was WAY too high and they are putting me on meds for that tonight. I had the CVC (Central Venous Catheter...sub clavian) which basically means they stuck a line in my upper right chest just under the collar bone. It unfortunately took her three times to get it in the right place and one time she hit the collar bone. That still hurts and in fact, hurts so bad we are about to head back to pick up some pain pills they ordered for us. If you know me well, you know I rarely take pain pills even after major surgery..so yes, this hurts. We may have found a trailer already. My uncle has one he said he won't be using. We are trying to make sure it will work and have already been to the trailer park that has a shuttle..they do have a slot opening up next week that is very shady and in a quiet area. Now for the newest challenge. The insurance people here have said that Cigna is pretty good about paying for anything that is typical treatment. However, what they are wanting to do with me is use the typical high dose treatment and then add the new drug, Valcade. It really isn't a new drug, but has been used alone with great results. However, since adding it to the high dose treatment I need to have hasn't been done, it will be considered a Phase I clinical trial. The drug company will pay all of the money for the Valcade..it won't cost Cigna a dime. However, they said Cigna often has a problem paying for what they would normally pay for anyway IF something else is added. Their concern is that the new drug might cause a reaction that continues my hospitalization and then they have more expense. The Dr. is going to fight for us if Cigna baulks at paying but if push comes to shove, we'll have to back out of the really good stuff and settle for the regular treatment. The dr. said that we simply couldn't pay the chemo on our own as the drugs alone were around $100,000 for five months...geeze, I thought I had read they were about $800 a month...guess not. Pray that Cigan will see that this isn't going to cost them any more and will give me a real shot at not just a few more years, but an actual CURE! That's all for tonight. I've just taken pain pills and . We should be back in Dallas about 2pm tomorrow and hope to stop by the school to see everyone. Brad

Sorry but this is now Tami trying this out!

2007-03-29T08:39:00.000-06:00

Brad was just about to sit down and send out this blog request when they called him back to have his CVC put in. He is having a TERRIBLE caffeine headache so he was glad to go. The sooner they plug him in the sooner he can have a Dr. Pepper! How sad! So this is my first attempt. Thank goodness I knew all of his passwords, so I tried a few and got in! You know I have to keep up with all of his online girlfriends and such. LOL! For this minute's request-as you know we are working minute by minute right now until we talk to the dr. It was "again" no coincidence that when we came to the Infusion Therapy unit to have the CVC put in that we ran into the gentleman we met last week who is surving mantle cell and his wife. As we hugged, we began our excited talk about the trial. They were very excited for us and said that we did need to move down here. So we asked where they stayed because we have looked around this morning and see $$$ only!!! They mentioned that there is an RV park closeby that has wireless internet...a MUST......and it is less expensive to rent a place there for a month than a week at this awful looking hotel that Brad was saying he could stay in! I told him if he wouldn't stay there on a vacation, I certainly wasn't going to let him stay there when all things need to be soooo clean around him. DUH! So here is the request. Does anyone out there have access to an RV or travel trailer that they will not need to use for the next few months? If so, please let us know ASAP. This sounds perfect and Brad has always wanted to live in an RV and I have refused that option many times. Man......he worked this out so he could get his way didn't he? As I said, this sounds like a great plan. No furniture needed, just clothes, toiletries and food. Brad's even talking about not needing many of his clothes since he is probably going to lose weight and will need a few new items while here! Of course, for me, I will need everything! In fact, I need to think like I live in Colorado to hang out at MDA! I can't imagine what the electricity bill is for this place. It feels like a freezer. Maybe I need to start having hot flashes while I am here so I can get those over with while I don't have to pay for the bill. Well....I guess in a way I AM paying for the bill! Enough for now. I am sure that Brad will get this blog up again as soon as we speak with the dr. in a few hours. Pray Hard and much love to all, Tami

I D 10 T error

2007-03-29T06:44:00.000-06:00

There is this story I always tell me students about an I D 10 T error that I heard long ago from another computer friend. It is about how someone was working tech support and a really stupid person called in for help. The tech support person on the other end of the line finally told the lady she was having an I D 10 T error and it was something that couldn't be fixed. They needed to take the computer back to the store they bought it from and get their money back. If you haven't been able to tell by now, and I D 10 T error is just another way to spell out IDIOT That is kind of what I feel like this morning. After going back through all of your responses on this blog and the 4 or 5 emails I rec'd, I decided to go back and read my own comments. In those I stated that I felt God had His hand all over this news about the new drug being approved just before we got there for specifically my kind of cancer. I then went on to say we had a big decision to make as a family about whether we should participate in the clinical trial. GEEZE, what an IDIOT . As many of you have so politely pointed out, here we are all asking...begging God for an answer to prayer, He comes through (no shock there) and then my ego is just big enough to think I have the right to decide if I want to take His help. Enough Said! Last night was a little tough. I threw up for two hours after trying to go to bed. I think I just over ate last night and payed for it but I'm sure some of it had to do with nerves. You would think my blood pressure would be up but it was 127/71 when they finished talking to us about putting in the CVC (chest port for lack of a better name) to insert all of the drugs. It looks like a typical IV line with two heads on it but it is inserted through your chest into a vein where it stops just before entering your heart. As of now I just have a rather large headache from no caffeine. You all know how I love my Dr. Pepper and so sprite last night and this morning just isn't doing the trick. Well were are going to pack up and drive around this area looking for less expensive extended stay hotels. The church list for apartments that are cheaper is backed up and you have to get on a waiting list so it appears I'll just need to find the least expensive hotel I can for the two weeks between this hospitalization and the next one. Thank you all for you words of encouragement and even the kick in the butt that some have provided. As Lisa said on here once, I am the most stubborn person she knows...except her. Brad

Big Decision to Make Quickly

2007-03-28T17:35:00.000-06:00

I'll say up front this is going to be a long one. We just finished our visit with the specialist for my type of cancer. There is what our Dr. feels is some very exciting news. It causes us to make a decision and very quickly. I'll spell it out and maybe someone can help us think through it. There is drug that has been showing promise for two years. Alone it has a 33% remission rate for mantle cell which is very good. In combination with one other drug, it has been even better. It has not yet been approved to be combined with the very heavy Hyper CVAD that I'll be taking...that is, until today. Approximatley one hour before we arrived to see the dr., he rec'd an email saying the government had just approved this new drug to be used in combination with Hyper CVAD for phase I clinical trials. My dr immediately called the manufacturer to talk to them about me. I fit the profile of who they need to try this with. There are some minor side effects but the potential to add years to my life appears to be much greater by adding this drug than without it. The dr. is very excited about it's potential and I would get to be the first. I find it very ...well, doubtful that it is by chance that one hour before I get there...the perfect fit for this new clinical trial, that a drug my Dr. has been waiting to be approved for combination use gets approved. I feel it is an answer to prayer and God has His hand all over this. Now, for the hard part. Being a clinical trial, the Dr. doesn't feel the drug maker will allow me to return to Dallas during it's use. I have to be tested every two days...for the entire course of treatment...that will last until August or Sept. Yes, that means moving to Houston full time...as in no income until the summer when I get paid anyway. Tami would have to continue to work but has enough time built up that she could probably arrange to be here weekends and one or two days a week for the last 9 weeks of school and then move down here with me. Several churches provide furnished apts here for a minimal fee ($20 - 35 per day) for long term stays. We could do that but then it makes no sense nor could we afford to pay for that apt in Irving. That means breaking a lease and owing them...I've never broken a contract of any kind in my life and don't want to start now...but if I have a better chance of living longer by doing this, don't I take it and worry about a broken lease and a little lost income later? Tami can stay somewhere until school is out. Katie is ok until May but was looking into an apt. anyway starting in May so she would be ok. I'm so confused and so is Tami and Katie. We've all talked about it and just aren't sure what to do. LOL..maybe we are just hungry. Well, we are off to eat and see if that helps. I can eat whatever I want but no caffine...(ie Dr. Pepper) so this could be a rough night. If anyone reads this while we are gone, PLEASE give words of wisdom. We have just over 12 hours to make a decision unless the drug maker allows us to do this at home then there is no decision to make. We just need to be prepared. Brad, Tami and Katie

Leaving Today

2007-03-28T08:05:00.000-06:00

Rec'd a call back today from my Dr. and he says they can get me in today. We have 3:30 apt to do preop stuff which I presume means pay more money, then I meet with the Dr. at 4:30 to have the procedure explained and do blood work. Tomorrow morning they will put the lines in and then we are free to do something, not sure what, but something until 6pm at which time they'll admit me into the hospital. He said they do chemo 24 hours a day and will have me glowing (my words, not his) by 10 pm. So, if you look to the SSE Thursday night after 10pm and think one of the refineries is on fire, don't worry, it's just me. I'm not sure if I'll be posting or not from the hospital but Tami will be able to if I can't. Till then...thanks for all of your support. My school friends at Farine and the Irving ISD have been incredible. You'll never know how much your support will help while we are going through this fight. We love you all very much. Brad, Tami and Katie

Back to MD Anderson

2007-03-27T13:14:00.000-06:00

MY oncologist called today from MD Anderson. Tests showed extensive involvment of the cancer in all regions of my lymph nodes and in my bone marrow. He did not mention anything about it being in other organs but I failed to ask about that. He said it was very aggressive and we shouldn't wait more than a day or two to get started. He gave me the option of doing the treatment here in Irving but he kept saying something about how some doctors weren't comfortable with this treatment since it was very high dose. After talking to him a bit, I decided to worry about the money later and head to Houston. Tami and I will be leaving tomorrow or Thursday morning to start treatment. I'll be prepped that afternoon and return the next morning to be admitted. I'll be in the hospital 6 - 7 days with treatment if all goes ok. I'll then be released and return to Irving where I'll be tested twice a week for my blood count to make sure I'm recovering ok. They will allow to me return to work for those next two weeks with some restrictions that we've already got worked out. I go back in three weeks for the second round of treatment (a different type) and will be in the hospital around 4 days before returning. The plan is to then have treatments done in Irving for the remainder of the 3 months or so of treatment if we know my body doesn't have a bad reaction to the drugs. There is some good news. The dr. said my heart checked out great..no problems there and my blood work actually looked fine. For stage IV MCL I guess that isn't always the case. So it appears my body has a good chance of being able to handle the chemo that they want to give. Well, I'm going to sign off to get some work done at school before we leave in case we don't come back tomorrow. Thanks again for everyone's support, both spiritual, emotion and financial. Our family couldn't do it without all of you. Brad, Tami and Katie

Each time the phone rings

2007-03-26T18:35:00.000-06:00

So every time the phone rang today I jumped. I kept waiting to see that 713 area code that would tell me it was him...but it never came. To those of you that called, sorry that I didn't sound excited to talk to you, it's just that I was waiting to here when and where we start. Major praise today. We've had a few financial donations lately that are helping me to make my mind up that if the Dr says I have a better chance in Houston...we go to Houston. My extended family has been a great help and today a envelope from friends arrived from the church where I served as worship pastor several years ago. I know you don't want your names mentioned so I'll just say thank you and I want you to know that I wish there were more words to say to express our appreciation. You think sometimes out of sight, out of mind and then someone from the past just pops in your life again...this time financially. Thank you, thank you, thank you. Oh, while I'm thinking of it...to the 175 pound guy that lives above us that walks like he is twice my size...ease up dude. I bet you I can map out his apartment exactly where all of his furniture is. No worries, one more week of this and then we move to the top floor smaller apartment...huh, closet...whatever it is. Well, here is to good news tomorrow. I'm actually getting nervous. Why now? I already know what I have and what the odds are. Well, tomorrow I hear how my tests turned out. Was my cardiac test good enough to handle the high dose drugs? Was the bone density scan ok? How about all of the CT scans they did from head down through my pelvic bone? The PET scan that checks for cancer activity in all of your cells from head to thigh...how fast did it show the growth rate was? Did it confirm what the pathology report showed..that my cancer is growing "extremely fast"? How soon do we start the Hyper CVAD drugs? Do we need to move to Houston for a while? Can I still work some? Well, you get the idea. I'm ready for anything but I'm concentrating on getting news that says there is a way, any way, to treat this disease that has a chance. Well, here is to a night with little to no night sweats. Mary, I might try your idea soon but I think my blood test would look funny with estrogen in my system. Think they would then order a hysterectomy? That would be funny...sorta.

Is It Just Me?

2007-03-25T18:49:00.000-06:00

Great service today at church. Pastor Andy talked about not feeling sorry for yourself (at least that is what I heard) He gave two examples of church members, both of whom are going through cancer. Yesterday I'm watching a show and it talked about a child loosing a parent to cancer. This afternoon I turn on 60 minutes for a few minutes while preparing dinner and they are interviewing John Edwards and his wife who has just been told her cancer is back and has spread and now can't be cured. So, is it just me or did everyone else hear the same things? LOL It really is kind of funny but maybe I just pick up more on it now. I will give Mrs. Edwards a lot of credit. She talked about how she isn't dieing from cancer, she is learning to live with cancer. What a great way to think about it. Her kids asked if she was going to die from this. She told them that everyone is going to die, she just has the benefit of knowing from what. Ok...she left out the part about it probably being a tad bit earlier than normal too but the kids don't need to hear everything. We are supposed to hear from the doctor tomorrow or Tuesday. I have a feeling these are going to be very long days waiting on that phone call. I feel like a runner that has been at the start line for a few days waiting on the starter to shoot the gun and he is just sitting there. I'm just cocky enough to feel like I can handle any news they give me but I'm not patient enough to wait on it. So, I'll work on my last master's degree class that my professor has been nice enough to give me the assignments ahead of time on. Six more weeks and I'll graduate. Yeppie. For those of you reading this to hear more of the medical news...here is that part. The pain in my mid section where they first found the cancer is increasing slightly. I have two fairly new nodes on either side of my neck that are growing a little more each week. The right one isn't too bad but if I try and turn my neck to the left I can really feel the left one. I became sick at my stomach today and the thought of food was simply nasty. If you know me, well...enough said LOL . The night sweats are about the same but I actually skipped a night of them Friday night...that was nice but a little strange. My energy level seems to be ok. Tami and I are still walking frequently on the canal so exercise isn't a problem. Enough for now. We are starting to pack a little as we are moving to that less expensive apt next week. Our wonderful co workers have said they are going to come move us. What a group of wonderful people we work with. Of course, they are all teachers so what do you expect? Brad

Feeling Good

2007-03-24T17:06:00.000-06:00

I think I've completely recovered from all of the testing earlier this week. I feel pretty good for the most part. Still expecting the oncologist from MD Anderson to call late Monday or sometime Tuesday with his recommendations and the results of my tests. The main thing we are wanting to hear is that my heart tests come back strong enough to handle the high dose stuff they want to try. If not, we have to do the conventional stuff which is much easier on the body but not very effective with my disease. We have been really bad before about not writing down questions and then forgetting when the time comes. Now we are keeping a sheet of the most important questions we need to ask. We are starting to wonder if it wouldn't be better to have the treatment at MDA instead of here in Irving. That is something we'll talk to the doc about. While it would certainly be more convenient to do it here in Irving, if the doc thinks we would have a better chance down there, we need to consider it. With treatment every three weeks, that might only mean a few days every three weeks there and the rest here. We also have to have the conversation about me continuing to work during the high dose chemo. I'm not under some type of illusion that I'll feel wonderful all of the time but I also don't think it will totally kick my tail end each and every day either. The bigger question is what will the doc approve.

It's All About Timing

As many of you know, Tami and I had just decided to make some life style changes weeks before this bombshell. We sold our house and moved into a loft apt. We were both about to finish our masters degrees and I was about to start work on my PhD. We turned in our very conservative Altima at the end of the lease and decided it was time to live life and bought a used 2002 BMW. Two weeks later, we rec'd the news that, had we known just a little earlier, would have changed some of our decisions. We are both continuing with our masters. I finish in 5 weeks and Tami will finish later this summer. Thankfully the apt complex is letting us move into a smaller, less expensive apt with no penalty. That helps. We've also decided to trade in the BMW already on an older SUV. Yeh, you take a hit on it but as many trips as we are going to be making and the way I anticipate feeling doesn't match with a BMW but more like an Explorer or Trailblazer....kind of funny, back to our conservative roots. Hey, a month of a mid-life crisis was better than none...LOL We look back and thank God we sold the house. That takes a load of our minds.

I doubt I'll write tomorrow. Not much going on but church (Irving Bible Church) , Nascar (Go Jeff Gordon) and getting ready for school on Monday. I'll post again Monday afternoon.

Back at School

2007-03-22T16:50:00.000-06:00

Boy was it good to be back at school today. Yeh, I'm tired but other than that, I feel great. Those of you that helped out today, Cara, Kiersten, Stephanie....others I failed to mention, thank you so much. I just read through the FAQ section on our school insurance and it gives me a little hope that some of the bills won't be as bad as we thought. It says that "The Out-of-Pocket Maximum (OOP) is the dollar amount that is the greatest amount of coinsurance (% of bills) that you will have to pay in one plan year. Your office visit, ER, Hospital and Urgent Care copays do count toward your OOP. The OOP does not include your deductible. " So it sounds like no $1,500 copay for each hospitalization nor any $200 for each day at MD Anderson. OK..that will help alot. Now we just have to see what the chemo drugs are going to cost. I was reading the cancer insurance information that Allstate sells with our school insurance (that we didn't buy of course) Wow, that would have been nice. To my fellow school teachers, consider it as you read through our struggles. I pray to God that it doesn't happen to you, but it could. Tami, Katie and I are ready for the next step but this waiting is going to be old really quick ( or is that quickly?...4th grade writing teachers, help please) We should know on Tuesday what type of treatment and how soon we need to start. Thanks again for all of the cards and emails. We are still struggling with being able to accept all of the help that is being offered but I'm sure we'll get better and better at it all the time so watch out. Brad

It's Good to be Home and a Lesson in Insurance

2007-03-21T15:49:00.000-06:00

We are back from MD Anderson. I'm a little sore still from the bone marrow aspiration and the other part of that proceedure..whatever they call it when they take actual bone peices from both sides of your lower back. I was really sick at my head (no comments please) most of the way back but that is clearing up. I presume it was from all of the different drugs they put in me the last three days for sooooo many different test. Next news isn't until next Tuesday or so when my oncologist calls me with all of my results and treatment plan. We were suppose to go down there to review that with him but then I found out more about our insurance. Not only do we have a $7,000 out of pocket expense, but every day we do anything at MD Anderson or any other hospital on an outpatient visit they call that a $200 copay. In addition, every time I'm admitted for this special hi dose chemo that is another $1,500 "copay" .Lesson is....don't look at your "out of pocket" and think that means out of pocket. So far this year I've payed $7,800 toward my medical expenses and the insurance has paid $7,700. OUCH! Plan ahead better than we did. Count on at least twice what the out of pocket is. Take every coverage you can get your hands on. When you are dealing with a disease like this...any disease for that matter, you need all of your concentration on dealing with your health, not worrying about bills and lost income. I'm looking forward to getting back to school tomorrow. I think I'll be fairly close to normal (insert your own personal jokes here about me ever being normal) and am eager to see my kids. Bradley

Hardest Day So Far

2007-03-20T22:47:00.000-06:00

What a difference a day makes. Let me start off by saying we've met some absolutely wonderful people that are cancer survivors and have exchanged contact information. I think they will be a wonderful benefit to us and I just hope we can help them some too. We arrived at the hospital at 9:30 am. It is currently 11:45 pm and we haven't been back more than 15 minutes. My last appt was 7:10pm for a full set of CT scans. I didn't get in to the scan room until after 10:45 pm! The bone marrow asppiration was by far the hardest thing today. I'm very sore from that. They put a needle through your lower back (high part of your butt really) and go into the bone...ouch. Then they take another instrument and screw out a small peice of bone from both the left and right side of the back. That was...well, not comfortable and it is starting to be a little less comfortable now. We did meet a man that was 8 years out from diagnosis of his mantle cell lymphoma so that was really encouraging. He doesn't have the blastoid version that I do but still it is close. Tomorrow morning I have a PET scan (whole body scan) that takes about 3 hours. We then meet with a social worker about possible help the hospital can tell us about and we'll be on the road to come back home. I should be back at school on Thursday....although I'm sure not as chipper as normal. My oncologist is to call me next Tuesday and tell me all of my results and what the exact treatment plan is. Today has been the hardest day by far. I'm both exhausted and in pain...but I know both are just temporary. thanks for all the great emails and calls. It keeps us going. Brad and Tami

First Full Day at MD Anderson

2007-03-19T17:08:00.000-06:00

Let me first say that this place is everything they say it is. I have a team of about 6 or 7 that I deal with (or they deal with me) and everyone we have met is wonderful. Now for the low down. There is a new treatment that seems to hold some promise. Even as massive as MD Anderson is, they've only seen 14 people that have what I have but there seems to be some hope. First, 86% of the people that make it through this high dose treatment go into what they call "clinical remission" which basically seems to mean that they have most if not all of the cancer cells gone. That is really high!!! Of those, about 50% relapsed within 2 1/2 years but the other 50% of the group not only has made it past the 2 1/2 years...they seem to have hit a plateau where none of them have relapsed. I know, not a cure but it is encouraging. They do have some with my disease that they have been following for over 10 years so it is possible! What it entails is a three week treatment schedule that is repeated 6 to 8 times. First I have chemo treatment A which is something they call Super CHOP with Rituximab and then three weeks later I go back in for some combination (treatment B) of chemo including a drug called methotrexate. That one requires me to be in the hospital for three or four days each time (fun, fun) So far, really good news. Now for the dose of reality. In this study of people doing this high dose chemo, they had several young people (around my age) that died due to infection. This high dose stuff leaves you with basically no immunity to any infection. (they call one off them Super CHOP...CHOP is the standard treatment for many cancers but this is the high dose version of that) What that means to us is a high probability of no work. Since I teach 5th grade, the doctor said my chances wouldn't be very good due to all of the bugs those little buggers carry around and although he wouldn't stop me from working, my chances were much better if I stayed away from all kids 12 and under. They aren't even allowed in the lymphoma center at MD Anderson at all. I am, however, getting use to seeing people with no hair so that shouldn't be a problem for me at all. I'm trying to get Tami to cut hers off in support but she seems resistant for some reason?????? LOL So, what it sounds like so far is I have a very good chance at a minimum of a "clinical remission" for some period of time and a 50/50 shot at a much longer remission. That sounds much better than what we had first been told here locally from my docs and reading on the Internet. While typing this I just rec'd my schedule for the rest of this week. I do the bone marrow with drawl tomorrow (I'm not looking forward to that one), numerous CT scans, a cardiac injection (that doesn't sound fun either) and bone density scans. As of right now, I'm scheduled to be finished on Thursday before lunch. I should be back at school on Friday which will mean I have an entire 2 days of sick time left for the rest of the year. (can you hear the excitement in my typing?) Well friends and family, there it is. I feel pretty good about it all (except about being away from all my kids for so long) . Those of you that know me know that sitting still isn't my specialty so pray for Tami and the nurses that will have to deal with me. THERE IS HOPE! It's not going to be a fun journey but hey, life should be exciting...right? We send our love and thanks for all of the wishes and emails. Cardiac injection is at 10am and bone marrow testing is at 3pm so say a little prayer. Until tomorrow. Brad

Off to MD Anderson tomorrow

2007-03-17T21:04:00.000-06:00

Today has been a long day. As the song says, "let's get this party started" is what keeps playing in my head. I'm ready, surprisingly more so than I thought I would be. I know those of you that don't know Jesus are probably getting tired of reading this but it's true...He is in control. Yes, we still cry from time to time but we are so ready to face this. I'm almost eager to start treatment. I think I'll be fine as long as they tell me that they have something to try...anything. The best doctors are there and we have complete trust in their abilities. From what I read, they are just waiting for a patient with this disease that is as young as me to try things on...we'll, here we come, plug me in and start me up. The support we have rec'd from our friends and family is overwhelming. There are friends out there that we didn't even know we had. You'll never know how much your support means. It seems everyday there is another card in the mail wishing us the best or supportive emails coming our way. Thank you from the bottom of my heart. Brad, Tami and Katie

First Oncologist Meeting Yesterday

2007-03-16T08:54:00.000-06:00

So me, Tami and Katie met with the local oncologist yesterday. We really didn't learn much more other than he is certain that the lymphoma has spread to most all of my lymph nodes. He agrees that we need to get to MD Anderson and that he will follow whatever treatment plan they recommend. He said he trained there and knows many of the dr's still there. He is a very interesting man with a great sense of humor. For those of you that know me, we'll get along just fine. When he met me and Tami (katie was in the waiting room) he asked if Tami was my wife or daughter (ok, kind of lame...but he tried) and when we were all leaving he asked how a guy like me was able to get such a neat family. ( ok, I had to agree with that one) We leave here Sunday to head to Houston. We should be there through Wednesday or so unless they want to start treatment immediately. My bosses at school have been great about this entire thing. Tami and I teach at the same school so they are loosing two people each time this happens and they continue to stress to us that my health is number one. Thank you, thank you, thank you. Some of you have asked how I'm feeling and noted that I don't talk about that. To be honest, other than being a little tired and having this dull ache in my abdomen, I'm ok. The night sweats are getting worse but other than that, I'm not exhibiting any of the other symptoms they mention. I keep waiting for that dramatic weight loss but wouldn't you know I don't have that symptom yet!! I'm still wondering if I really do have cancer.....I don't look or feel like it, but I know the test don't lie. We are still in good spirits although we occassionaly just break down crying and hold each other for a while. It seems to help. As Stephen Curtis Chapman sang...."This is the great adventure". “You may have had to suffer grief in all kinds of trials. These have come so that your faith—of greater worth than gold, which perishes even though refined by fire—may be proved genuine and may result in praise, glory and honor when Jesus Christ is revealed” (1 Peter 1:6-7). Bradley

Family

2007-03-14T21:55:00.000-06:00

My family is AMAZING. Your support and love are overwhelming. Thank you doesn't seem to be enough but is all I can think of for now other than to promise that we will fight this with all of our strength. Oncologist here in Irving tomorrow. MD Anderson on Monday. Brad

Little miracles add up

2007-03-14T10:29:00.000-06:00

So yesterday I wrote about how we are being allowed to move to a different loft apartment in this building..one that both has no one above it so we can sleep AND is $400 a month less. That was great news. Today we went to turn in our leased Altima. The contract says there is a $250 disposition fee. Tami got to talking to the guy and mentioned what we were going through. Turns out his son has a brain tumor and has been to MD Anderson as well. He told Tami he was sending out our information to his prayer chain and that the car looked great....good luck and we don't owe anything. I know it is only $250...but that is big now....but it isn't even that. When things look so bad, there are little miracles all around if we are just willing to see them. I'm sure some would say that it was just a coincidence. Sorry, I choose to believe otherwise. On the medical side, I had the staples removed this morning. Not much to it as I barely felt it...much less than I expected. She said the incision looked great and there is no sign of infection. So far, so good.

Some Good News

2007-03-13T16:55:00.000-06:00

It's not medical good news but good news non the less. Tami and I have been talking about wishing we knew this before we signed this expensive lease on our apartment....we had also told many of you about how we had an upstairs neighbor that kept us up at night. Well, our lease says we can switch apartments IF there is something available after we have been here three months. I was concerned about getting enough rest after treatments with the jerk above us... Tami goes down and talks to the manager. Turns out her father died from something similar (that isn't the good part) so she understood. They then tell us that a guy is moving out of a smaller two bedroom and it is on the top floor....it had been reserved but the person that wanted it called today for some reason and decided to cancel. It has no one above it and it is $400 less!!!! They'll let us move at the end of this month. If that wasn't great enough, I was still worried about hearing the people on either side. As we were walking up to see where the apt was in the building and what the view might be (which is fabulous) the guy that lives there walked out of the parking garage. I introduced myself and asked if he minded talking to us about his place. We were able to make sure that the noise isn't too bad and he only occassionally hears his neighbors. WONDERFUL. At least now I won't be AS worried about paying for the treatments. No, $400 a month won't begin to touch it but it is a start. I know some of you are not believers but God can make mountains move. This might have just been a hill but any good news at this point is worth celebrating. Brad

MD Anderson moved up to this Monday

2007-03-13T13:47:00.000-06:00

My case manager from MD Anderson called. They want to see us Monday morning at 10am in Houston. Presuming we can come up with the $$, we'll leave here Sunday night and be gone for two or three days. That is the good part. We don't have to stay for 7 - 10 days like they had said before since I am bringing tons of medical documents including actual copies of my CT scans from this month. Now we should be there Monday, Tuesday and maybe Wednesday. Come home and then go back for a day or two the next week to get the plan and start my treatment. Brad

She Meant Well

2007-03-13T11:48:00.000-06:00

So I started the job of gathering all of medical records this morning from the different places I had been in the last few weeks. When I went to the hospital, I figured it would take a few days for them to get my requested documents copied so I really wasn't expecting much. The lady at the desk was very understanding and told me she would take care of it while I waited. Wow, what service. Then she asked me what type of cancer I had been diagnosed with....when I told her, she talked before she thought. "Oh, they can't do anything about that one" I know she meant well...but she didn't really need to remind me of the obvious.

Pray for financial need

2007-03-13T10:03:00.000-06:00

So MD Anderson just called and said I have to come up with $5,500 before they'll see me next week. Where does that come from as two public school teachers? If you are reading this and believe in prayer, please pray that something happens that will change that situation.

Not the news we wanted

2007-03-12T15:34:00.000-06:00

This morning I rec'd the pathology report for my lymphoma. "Mantle Cell lymphoma, blastoid variant". I eagerly hit the internet with both hands flying, looking for that bit of good news I was sure was just around the corner. I wasn't what I was hoping for although not all of the news is bad. First, the not so good. This is a rare type of lymphoma that does not seem to respond to regular chemotherapy. Even when chemo does have some effect on it, lifespan after diagnosis is only 2 - 4 years. ( Guess I won't bother starting that PhD like I had planned ) . The one large study I saw said that the average life span was 2 1/2 years after diagnosis with 9 years being the max...but then it said "except for the blastoid type which is much less". This is the part when I raise my hand and say, "yep, that's the one I have". Although we have an appt with a local oncologist for this Thursday, March 15th, I have already called MD Anderson in Houston and have an appt set for March 21st. I've sent them my records as requested and they said if they see it as an emergency, they'll get me in this week which would be good since we are on spring break. Otherwise, Tami and I will head down there next week and find a place to stay for 7 to 10 days for me to have a treatment plan worked up and started. Now, the silver lining. ( In all stories there has to be a silver lining, right? ) The cancer is listed as "extreme" when talking about how fast it is growing. How can that be a good thing? Apparently in cancer cells, when they grow fast, they are more able to be zapped by the chemo drugs. If that is true, we may have caught a break by it being so fast growing. Well, there it is. I can't say that I feel great about things at this point but I'm still hopeful that some clinical trial will light me up with just the right amount of drugs to kill the cancer but leave me standing. I do have to be honest and say I lost it today. When I read the prognosis, I couldn't stop crying. The "why me" part hasn't even entered my mind but I do keep wondering where the "oh but it ain't quite so bad" part is that I'm missing. I'm coming to realize that it is simply not there, at least where we can see it in plan view. When I know more, I'll post. Thanks for all of your prayers and support. Brad, Tami and Katie

Sat. March 10th

2007-03-10T12:48:00.000-06:00

Finally rec'd a call back from the surgeon's office yesterday just before 5pm. They don't have the complete diagnosis but they do know it is non hodgkins lymphoma. The obvious next question is this....is that better or is hodgkins better. I started doing some research and found the answer ..but it wasn't what I was wishing for. Let's just get the not so good news out of the way early. Hodgkins lymphomas represent about 7,000 new cases a year with about 1,300 deaths. Non Hodgkins (like I have) represent about 54,000 new cases a year with 24,000 deaths. I like the odds of hodgkins much better but somebody fogot to let me choose. So, now I wait until Monday or Tuesday to see which of the 30 something different NHL's I have to see better about what my odds are. It really boils down to how early they find it and what brand of NHL it is. Those of you that know me fairly well know that I've had red sores on my legs for about 9 months that the dr's haven't been able to figure out. Turns out that is a sign of lymphoma that we hadn't thought about. Guess that explains why they wouldn't go away. Even with the figures I've quoted above, it isn't time to panic. What good would that do anyway? The death's are less than 50% and I've always considered myself an above average kind of guy (not by much mind you) so I should be fine. I'll write again when I know more. Brad

2007-03-09T11:34:00.000-06:00

I hear that writing things down as you go through them can be quite theraputic. I'll take that to heart and give it a try. This is mainly for me as it will be a very detailed description of what I go through in my battle with cancer. If it can help someone else, great. However, it is really for me to look back on AFTER I have beaten cancer to a pulp. Here is what has happened so far. Jan 07 - had 1/2 thyroid removed plus a few lymph nodes. Everything checked out cancer free Two days later, back in hospital for possible blood clot. While having that test, the tech said that she had never seen lymph nodes as "angry" as mine. I know they aren't suppose to say anything but she did. Obviously that got me to wondering. Radiology report comes back next day with no mention of blood clot OR the swollen lymph nodes in my groin. I ask my ENT surgeon about them to which he gets mad at tech for saying anything. He calls her supervisor to complain and talks to radiologist. They agree that the swollen lymph nodes are just big because I'm a big guy ( 6 ft tall and just over 300 pounds) . March 07. Now having abdominal pain, night sweats around the neck and head and more swollen lymph nodes in my neck. Go see primary care dr. who sets up abdominal CT scan. By that night, I'm in the hospital with what my primary care dr. thinks is lymphoma. Next day see oncologist and surgeon who both wonder what my primary care dr. is seeing...they don't think it is lymphoma. They don't feel the can justify me being in hospital for insurance purposes. I go in two days later for outpatient surgery (biopsy) and guess what...those lymph nodes in my groin that the tech thought looked big but radiologist didnt'....lymphoma!. It's now four days later and I'm still waiting on complete pathology report to say what kind I have. Another thing happened yesterday that bothered me.....not a big deal but I just don't get it. I called an oncologist office that had been recommended. Texas Oncology. I was told that they lady that took appts (Heidi) just took another call and they would send me to her voice mail and that she would call right back to set up an appt. That was at noon on Thursday. Friday morning I called and talked to Heidi. She said "yeh, I haven't pulled my messages yet from yesterday." If you are a dr's office for cancer patients...don't have that kind of customer service. People just told they have a deadly disease need a little quicker response than that.