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
March 30th, 2007 at 06:06pm
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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
March 29th, 2007 at 07:31pm
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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
March 29th, 2007 at 05:22pm
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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
March 29th, 2007 at 08:39am
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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
March 29th, 2007 at 06:44am
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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
March 28th, 2007 at 05:35pm
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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
March 28th, 2007 at 08:05am
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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
March 27th, 2007 at 01:14pm
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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.
March 26th, 2007 at 06:35pm
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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
March 25th, 2007 at 06:49pm
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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.
March 24th, 2007 at 05:06pm
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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
March 22nd, 2007 at 04:50pm
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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
March 21st, 2007 at 03:49pm
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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
March 20th, 2007 at 10:47pm
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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
March 19th, 2007 at 05:08pm
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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
March 17th, 2007 at 09:04pm
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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
March 16th, 2007 at 08:54am
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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
March 14th, 2007 at 09:55pm
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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.
March 14th, 2007 at 10:29am
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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
March 13th, 2007 at 04:55pm
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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
March 13th, 2007 at 01:47pm
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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.
March 13th, 2007 at 11:48am
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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.
March 13th, 2007 at 10:03am
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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
March 12th, 2007 at 03:34pm
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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
March 10th, 2007 at 12:48pm
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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.
March 9th, 2007 at 11:34am
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