First, yes Katie, hitting golf balls with my daughter on the driving range like the good ole’ days was probably the best thing I’ve done in months….more, please!
Tami and I are at my dad’s house in East Texas. I think I’ve broken every rule I was told not to do by my doctor but that’s what’s fun, right? I rode my nephew’s motorcycle Sat (thanks Heath!) but didn’t have my jeans on….yes, pipes are hot and the flesh on your legs doesn’t hold up well to hot metal. At least this burn is more manly than a pop tart burn. I’m not sure I ever enjoyed burned flesh before but it was actually worth every bit of the pain. My dad and I just returned from playing golf….yeh, not suppose to be in the sun that much but we tried our best to hit it from shaded area to shaded area. They should make a new type of golf for that.
I got pretty sick last night and it continued this morning but Tami and I did make it to church with Dad and Betty. As it stands right now, I’m getting back to normal and feeling pretty good. I think it was something about either the motorcycle or the golf..or both.
We head back to Dallas tomorrow to wash the clothes and then pack again as we leave Tuesday for Houston again. I have to have to crowns done Tuesday morning in Dallas so that my dentist will sign off on the transplant approval so we’ll be leaving as soon as she is done. I meet with the MD Anderson dermatologist Wednesday morning to try and figure out what is causing me to have a rash around my nose and mouth. Thursday is my last day of the IV chemo and then we return Friday. This is my last round of the IV…yeppie. You should see the bruises on my arms…geeze, looks like I’ve been beat up.
Until next time
Bradley
July 27th, 2008 at 09:21pm
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The node in my jaw that I wrote about two days ago that was beginning to shrink is now totally gone. The smaller one in my neck seems to be getting smaller too. Both good signs. I did fail to mention that my numbers did come down this week after two weeks on the chemo. Neutrophils dropped from 2.5 to 1.5 and whites were down to below 3 for the first time in several months.
Tami and I are heading to Tyler tomorrow to spend a few days with my dad and step-mom. Hopefully we’ll get to play golf on Monday morning before we head back to Irving Monday night. Tuesday I have to get two crowns done so I can get my dentist to sign off on the paper that says I’m good to go for my transplant. As soon as I get out of there, we are heading to Houston (driving this time). I’ve got a dermatologist appt at MD Anderson 8:30 Wednesday morning to see what this rash is all over my face.
I’m still amazed how good I feel compared to last year…of course this chemo is nothing compared to last year’s chemo. I’ll take this any day.
Brad
July 25th, 2008 at 08:44pm
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Chemo went fine today…that is once they got the IV in. How can such a big man have such small viens? The nurse came in and poked one arm, then the other. Couldn’t get the IV in without “blowing” the vien so she called the IV team. That nurse came in, poked one arm then the other, blowing both viens again. He called his supervisor who looked and felt…and felt and felt..and finally got it in. That all took just over 90 minutes so we were a little late getting started. Once we got going, it all went fine.
We flew in last night while the hurricane was already onshore. It was dry when we landed but by the time we got in a taxi, it was pouring. Sure enough, when we arrived at the hotel, we were assigned to the 17th of 18 floors. Thankfully, the storm stayed mostly to the south of us.
Good news….the new swollen node that showed up last week and was painful, is now gone. Even better news is that the node that started this entire ordeal that is in my jaw, has finally started shrinking just in the last 24 hours. The really small one in my neck hasn’t changed yet but I’m confident it will.
We fly back early in the morning and then will spend the weekend at my dad’s house in E. Texas before driving back down here next Tuesday for more testing and my last of the four rounds of chemo. I’ll still be taking the chemo pills but the IV’s will be done as of next week. Then I get to fly down here for a hour or two visit and then fly back. That sounds like all sorts of fun.
Until next time. God is good!
Brad
July 24th, 2008 at 06:50pm
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We flew back from Houston this morning. That was much easier than driving every week. Yes, I did fit in the seat but barely. (no pun intended) I will definitely be flying American instead of Southwest since they have the smaller planes that have one seat on one side and two on the other. I’m able to sit in the single side without bothering anyone just fine.
Chemo went better this time. No adverse reactions. The only problem we had is that on Thursday night…after an all day chemo treatment, I noticed yet another swollen node. This time on the right side of my neck. The big difference is this one is painful. They’ve never hurt to the touch before so I’m hoping this one is just due to an infection or something similar.
Lots of other cancer news. On the good front, our friend Shaylor, that had a transplant last year while we were down in Houston just got his latest report and it appears his wife will have to put up with him for a little while longer as he is still cancer free. Two other friends, that although I’ve never met in person..still feel like life long friends, didn’t get the best news. Susan is fighting a fever which is never fun with this stuff and Steve just found out that his cancer, like mine, is back. Susan, Steve and I were all fighting this thing at the same time last year. Susan had a transplant while Steve and I didn’t. I sometimes think this cancer is almost as bull headed as we are.
Oh, I have to share a non cancer story. If you only want to read the cancer stuff, stop here. If you want to know just how much of an idiot I can be (and who wouldn’t?), keep reading.
Revenge of the Pop Tart!
When Tami and I had met at Baylor, some 25 years ago, she had just stopped dating a guy that we ran in to on campus one day with a cast on his hand. When we asked him what had happened, he said that a can of beanie-weenies had fallen out of a cabinet and landed on his hand, breaking it. I know I shouldn’t have, but I just couldn’t stop laughing about that. Come on, make up a better story than that…you got in a fight or you fell off of your motorcycle or ….I don’t know, anything but beanie weenies fell on your hand and broke it. Fast forward to earlier this week. We are at my mother in law’s house. I put some cinnamon sugar pop tarts in the toaster and press down the slide. It is late at night and I don’t have the lights on. I hear them pop up and I grab one. Question. Do you know what happens to the cinnamon sugar coating when it burns? It turns into liquid….boiling liquid. I reached down and grabbed it….felt a warm sensation on my right thumb and then proceeded to throw the pop tart…only the burning didn’t stop. The liquid had melted onto my thumb. Needless to say, I have a large blister on my right thumb. So I ask you, beanie weenies or pop tarts…which is more embarrassing? Sometimes I just feel like an idiot….but if you can’t laugh at yourself, everyone else will.
Brad
July 18th, 2008 at 06:46pm
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I had hoped that this new chemo would be a cakewalk. I should have known better. I don’t feel anything near as bad as I did last year with that high dose stuff but I’m getting what can best be descrbied as waves of nausea. I can go a couple of hours feeling just fine and then get really sick at my stomach for an hour or two…then fine..then repeat. Hopefully this is just getting use to the new medicine. If not, when we go back this week I’ll ask for the anti-nausea meds.
Tami and I are flying down this week. I know I shouldn’t worry about this stuff but big guys like me, in this time of high price oil, are not looked upon favorably on an airplane. Southwest has more flights into Houston Hobby but they are very public about charging us big folks for two tickets so I can’t fly them. Last time I flew a small plane on American Eagle (which is what we fly to Houston), they came back and asked me to switch seats with another, smaller passenger so that we could balance the plane better. Seriously? Am I so big that I cause a massive plane a problem of balance? I know I shouldn’t stress about that stuff but that kind of thing worries me more than dealing with cancer. Weird, huh?
July 13th, 2008 at 06:56am
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We are FINALLY back at the hotel. We left at 6:10 this morning and just got out after 7pm tonight. I ran into a problem with the Rituxin just like the first time I took it last year. I got to the 3rd level where they are pumping it in a little faster and suddenly found myself itching. Sure enough I had whelps on the lower half of my body. Not really a big deal…it itches a little. The biggest issue is that they have to stop the treatments, give me meds to fix the reaction….watch you for a while longer and then start over. So, my 6 hour chemo that started after all of the blood work and chest xrays at 8am didn’t finish until 7pm tonight. I’m fine other than being exhausted. Tami is very tired as well from sitting in a very uncomfortable chair all day.
Glad we booked the hotel for two nights. We’ll head to bed soon, take our time tomorrow and head home after a restful night before doing it all again next week…and the next week…and so on and so on.
I start the clinical trial pills tonight…4 pills a night for 21 days then off a week.
That’s all for now. All I can think to say is Goodnight!
brad
July 10th, 2008 at 07:57pm
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Tami and I are headed back to Houston in the morning for more testing and to begin the weekly chemo treatments. We have moved all of our stuff out of our house and into two storage rooms plus some to Tami’s mother’s house. We are exhausted.
I talked with a rep from my insurance carrier and they are going to cover SOME of the travel expenses we’ll have for all of my tests and chemo treatments but wasn’t sure just how much. It is one of those, “keep receipts, turn it in and see what happens” kind of answers.
Thank you for all of the emails…well wishes and prayers. I just read an email from another mantle cell patient, Susan, who reminded me about my post from this time last year. Tami and I were wheeling around with my chemo pole and going from building top to building top at MD Anderson to see the fireworks. Yeh Susan, this year was a little better…although Tami and I were moving stuff for three days straight. We did stop just before the local fireworks displays started and watched from a school parking lot with tons of other people. They were both beautiful, but I think not being attached to the chemo pole made them look a little nicer this year!
Brad
July 8th, 2008 at 04:50pm
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Other than hearing “sorry, our bad. The cancer really isn’t back”, we rec’d the best news we could have gotten. My cancer is ONLY in the two nodes that I can feel. One in my jaw by my ear and one small one in my lower neck. Bone marrow that was so full the first time is still all clear….abdomen, pelvic area, chest..all clear. That is the first bit of good news. Second, I won’t be in out of commission as long as I thought. Dr. told me that I’ll be in the hospital for 5 days to get the high dose chemo..then as little as 17 days but more likely closer to a month inpatient. Two more months in a local hotel or apt and then I can come home. Good news #3. I asked about going back to teaching school to 4th and 5th grade, expecting him to say no more. His opinion? I should be back at work in 5 – 6 months taking only minimal precuations for the first few weeks. Good news #4. I’m going to participate in the clinical trial at MD Anderson to get me into remission and keep me there. It requires a lot of traveling (which we were hoping the insurance would pay for but doesn’t) but it is a very mild chemo that will allow me to continue working until I’m ready to do the transplant. Great News! The really great news was about outcomes. I had heard 40% mortality rate for allo (cells from other people) transplants. My dr. told me more like 10% – 15% and most of them had other problems. They just published a paper showing a group of mantle cell patients (what I have) showing after three years, 17 of the 18 patients that had a transplant are still in remission…after three years! All but one (yeh, my luck, I know)
I have decided I am doing the transplant at MD Anderson and not Baylor. Tami and I will be heading back down to Houston next Wednesday for more test and then I begin Chemo Thursday with the new pill and then a six hour IV of Rituxin. I’ll do that once a week for a month and then the rituxin will be over. I’ll still have to travel to Houston every other week for the next two months but just for a short visit and get the next round of pills. After three months, it is just once a month until we are reading to do the transplant or should the cancer come back.
We are packing like mad…trying to get out of this house this weekend and into a storage building and Tami’s mom’s house….all the time seeing if we can find an inexpensive house since we now know that I won’t be leaving to do the transplant for about 9 more months.
We are waiting to see if either of my sisters is a match. That will help a great deal. I can’t believe the difference in costs. If either of them is a match, the costs is $263,000. If they aren’t, the costs is just over $500,000. Wow, go sisters, go!
All for now. Thanks to all who are sending their prayers and thoughts along. I know most of you don’t post but many send me individual emails.
Brad
July 3rd, 2008 at 02:18pm
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