My numbers went down again today. Not what we wanted to hear. My white cells went from 500 back down to 400 and my platelets went from 26,000 to 17,000. The neutrophils showed up but barely. They have to be at 500 for me to go home. As of today they are at 10. I might have gotten 4 hours of sleep last night so that is really starting to add up to a little bit of a problem. .
My sister and step-mother are here and are out shopping with Tami today. It’s good for her to get out some.
We are still hopeful that my numbers will be good enough to have the CVC line replaced on Monday. For that to happen, my platelets need to be 30,000 at least that is the number they gave me this morning. I’m on day 14 of this round today which is about when the numbers should start coming back up so I’m still hopeful for good news the next two days. The nurse just came in and said they were doing some more work on me tomorrow which made her think I’m getting another blood transfusion tomorrow but no platelets.
Well I’m going to go walk a little on this floor and then come back and try to take a nap before the ladies get here. Thanks again for keeping up with us…especially now that we are having our struggles.
Brad
June 30th, 2007 at 03:29pm
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Hey everyone, this is Brad again. Tami has been posting for me as I simply haven’t felt up to doing anything on the computer. We are hoping that Monday might be the day I get out of here. That will be a full week for something that Tami had to talk me into even going to the emergency center to check out. Guess she was right about that, huh? Anyway, the Dr. said today that my numbers went up a little and they feel they might be going to continue to rise over the weekend. My white cells over the last few days have been 200, 200, 300, 300 and then today 500. Still not much when you consider you should be over 4,000…but it is a move in the right direction. My platelets were 10K then after getting more platelets went up to 19,000 only to go back down to 10,000 the next day. I rec’d another transfusion of platelets yesterday and today they were up to 26,000. Those have to be at least 35,000 on Monday before they’ll even consider doing the minor operation of changing out my CVC line in my chest that they think is infected. If those numbers are up, they feel my neutrophils (part of the white cell information) will be high enough for me to get out. They must be at least 500. Right now my white cells are too low to even measure neutrophils.
The dr. also says that if my numbers keep going back up, we may actually not get delayed in beginning round 5 which should begin on Sunday, July 8th. That would be a relief.
On the last posting Tami wrote about our emotional health taking a slight beating. That is true. You simply can’t stay up ALL of the time no matter what you try. I’m much better today but I have to admit that the last two days have been very tough when they come in each morning to tell me my numbers aren’t going up like they hoped. I wanted to ask them if they didn’t see the “S” on my chest and the big red cape but then I realized even I didn’t see them anymore. Part of the problem has been not sleeping…but I actually got several hours of sleep last night for the first time since Sunday night so that by itself helps.
We’ll get through this…it’s just reaching that tough phase that I kept hearing would come. It has and can just keep on moving past us if it wants to…thank you very much!
Brad
June 29th, 2007 at 04:53pm
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6/28- Yesterday was a much better day for Brad. He looked better with a little color in his face and he had energy to talk and watch tv and even take a little walk. His bed which cost $13,000 was TERRIBLE, so they finally brought him an “old” version and it was a little better. He just doesn’t sleep at all while in the hospital. I just left him today at 1. Before I left I hid him in the corner on my “guest” bed, pulled the room darkening shade and made sure his IV tree that has lights all over it was covered. I even made up his hospital bed somewhat. Hopefully, when someone opens the door they will think he is out of the room and they will leave him alone for awhile.
Dr. says there IS an infection in his blood or maybe involving his catheter on his chest. Good news is…they have already been treating him with the correct antibiotic for this type of infection. Bad news is….he will have to stay in the hospital until they get it under control. His numbers are not responding, as in going back up, because they are trying to fight the infection. Brad is getting a little depressed for the first time in this process. So am I. I think coming back and forth from Irving really worked for me because I had a chance to be normal too. Now we are both stuck here with no one to talk to or visit with except sick people or those who care for the sick. Also, the light at the end of the tunnel seems to be getting a little dimmer. Just two weeks ago we were so filled with hope that this journey would be over soon. Now it looks like it might drag on. This morning Brad just looked at me with sad eyes and said, “I have two more treatments to go.” He mentioned something about kicking cancer but now chemo was kicking him.
One good thing-We found out this morning that he shouldn’t have been on a low sodium restricted diet, but when you check in through the emergency room that is what the order says automatically. He noticed it on day one and asked a few times why but no one could tell him. Nothing changed yesterday, so today he told the dr. that if he had to stay in jail longer he would be demanding better food and some sleep. Dr. looks puzzled, says he took him off restriction as of Tuesday lunch. Oopppssss…looks like someone forgot to input that info into the computer so the food service people would let him order off the regular menu! At least he might get better food now.
I am off to write(thanks,A) another paper. At least I have four more weeks of grad work to keep my mind semi-focused on. Tami
June 28th, 2007 at 02:34pm
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Last night right after I posted, Brad started having more fever. He has had a continual 99.3 fever since we got out of the last round of chemo last Wed. The magic number is 101. Most nights it would flirt with the 100’s but never got to the magic number. Then last night around 6 it went there. It has to be there for an hour to warrant an emergency center visit. So of course it went back down to 100.5 for awhile. Then around 9:00 it went to 101.7! Brad…still as stubborn as ever…..says lets give it awhile. At 10:20 or so we (as in ME, the boss) said let’s go. Checked in around the time for a shift change. Not a good idea. Finally got back to a bed and got hooked up to some powerful antibiotics. Then they tell us that Neutropheinic (SP?) Fever requires time in the hospital. Great! Basically, from what the dr. told us just an hour ago is this. His white blood cell counts and neutrophils which fight infection are at Nadir….their lowest point. They are doing blood cultures to see if there is an active infection looming anywhere in his body. SINUS!!!DUH! Dr. says that 80% of cultures come back negative and they just have to pump you full of antibiotics and check your numbers until you are at a “theraputic level” to go back home. 20% have something and that just means they have to play the game harder to fight the infection. He seems to think from Brads description of the constant little fever then the rise that it sounds to be in the 80% category, but no test results are back. Looks like he will be in tonight for sure and maybe tomorrow night. Just wanted our prayer warriors to know what to pray this time. Tami
New info as of 9 p.m.-Tuesday, June 26th Tonight at around 7 Brad got a bag of platelettes….those things are his friends remember??? After that he was even interested in watching America Has Talent which is unheard of for Brad. He was even rating the acts! Man…..a few GOOD things in your body and what a difference! Since all of his RED (as in red parts of the blood) numbers were down also they were filling him up with two bags of blood too! Tonight was a perfect example of why we came to MD Anderson. First of all his research nurse came to his room. She is the one who is just writing up the research info and numbers on the patients in his clinical trial. By the way, there are 7 as of now and they are adding 3 more on Thursday. Brad is the first! She came because she found out he was in the hospital and wanted to see if he was pasty looking! That’s what she said! She is the one who calls to find out if he feels lousy yet so I guess she was satisfied today!! She took care of a couple of things that had bothered him in the hospital so far. Like having too little pain med prescribed than what his original Dr. prescribed. Then about 30 minutes later his main doctor called to see how he was. This is the head guy for the mantle cell division of lymphoma at MDA and one of the two drs. in the nation conducting this research. Then just about 20 minutes later the physician’s assistant who works with the dr. called his room. She said she was typing dictation and was about to cry because Mr. Bradley was having to go through all of this $(#$. I will explain Mr. Bradley later. I love this place. I miss family and friends but I LOVE this place. I told Brad that we need to take up a collection to buy better chairs for the caregiver to sit in in the rooms. They must have had someone that didn’t feel like they needed padding order them because man do they hurt your butt after awhile! I gotta get to bed so I can rest up for tomorrow. Tami
June 26th, 2007 at 11:27am
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I have seen Brad sit here at the computer a few times over the past 3 days. He just can’t sit here and explain how he feels. So here is my attempt. We went to the hospital this morning for a shot and ended up with 2 shots, a chest x ray, a wound care nurse and some “cheap” medicine. First of all, the 2 shots were the 1 that he gets for 10 days out of chemo that raises the white blood cell count. The second shot was the first one he has gotten to raise all of the “red” stuff in your blood-Procrit is its brand name. Dr. says he should feel “better” by Tuesday. He has had sinus and a cough for the past three weeks or so. They were worried about it settling into pneumonia, but Brad’s already been there and done that a few years ago! Chest xray was for their relief and Dr. just called to say it was clear. Wound care nurse….well….along with feeling like he has had the flu and then also been run over by a dump truck, we have also been dealing with some exposed skin where a man or even a woman wouldn’t want to have open skin! It is getting better but has been a real pain in the butt….literally! As far as the cheap medicine goes- I have a first name relationship with the MDAnderson pharmacy staff. It seems like I saw them everyday since Wed. of last week for something. Each time the bill ranges from $24 to $168 dollars. So I just automatically get the debit card out. Today I dropped off a prescription before the chest xray, went back to get it on our way out, got out my debit card and my friend behind the register said, “Whoa, this one is really gonna get ya. 189.” Then I realize she said $1.89!!!!! That was for 4 bottles of cough syrup! What a deal. Of course, the doctor said it was going to make Brad sleep. NOT! Nothing makes him sleep not Ambien, not Ambien CR, not Lunesta, nothing. Worst part of that is over the past 72 hours, he has only been standing or sitting or even out of bed for a total of about 10 hours. For those of you who really “know” Brad, you know that this is torture to him. He just feels pretty awful right now. Mr. Invincible has been beat finally. The cumulative effects are taking their toll. At least the nurses are happy now that he feels terrible. (You have to look back a few posts for reference to nurses and Brad.)
Speaking of a few posts ago. Thanks to all of you who posted. Some were no surprise at all. Others we both went-Really, how did they find out? I have read and reread those many times during this long, awful weekend. To quote Katie from her first camping experience at Joe Poole Lake ….”Daddy, I am tired of playing this game.” That’s where I am and I know Brad is too. To just know there are people out there still living a “normal” life but taking time to check in on us is priceless. Keep on letting us know. It sorta was fun anyway because Brad was like Dude…what did you write to get so many people to post!!! He was jealous!!! 
Love all of you guys, miss feeling “normal” (no comments from Mark or Jeff on that), pray hard for relief from chemo treatments and their after effects, tami
June 25th, 2007 at 04:38pm
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I’ve developed a rash on my arms and legs and actually have a couple of small, open sores on me that we’re watching carefully. I had a fever of 101 yesterday after I got home from round 4 but it went down to 100 and then was gone when I woke up this morning. The key temp is 100.5 for an hour and then you get to the ER.
Tomorrow is the first fast track after round 4 so I’m interested to see what my numbers are. I also get my Velcade from the end of round 4. That was different this time. It has always been the last thing they do at the end of each round but I didn’t realize that they had to wait until a certain “day number” of each treatment. Turns out they do this last Velcade on day 6 and since they didn’t get started until 2am on Sunday morning, day 6 is Friday.
Thanks to all who posted on Tami’s post….that was cool to see.
Brad
June 21st, 2007 at 09:55pm
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Just like round 2-this combination of drugs really does a number on Brad. He was pretty good up until Monday at around 4 then the crash came. I left around 8 knowing that he was being given multitudes of drugs to make him sleep and not think about throwing up (which they call YAKing in chemo circles). The room he is in this time is in the back wing and the internet connection will not stay so it is hard for me to take my last 9 online graduate hours without internet connections! I went back this morning to a VERY sleepy and groggy Bradley. It was ok though. Nice and quiet and not too demanding. Two of these drugs just really kick him pretty hard. I was thinking today about this is what his last round will be like in Aug. Too bad it has to be the one that gets to him so hard. We will see how he bounces back this time. If his nurses will quit calling the apt. to ask him if he feels bad yet, I think it would help! They just can’t believe that he hasn’t felt all that terrible between rounds. We go to the hospital everyday but he doesn’t see all of the nurses. Then at lunch they start talking about Brad I guess because then they call to see if he still feels good! That is some kind of service!! I am back at the apt. tonight since I have two huge projects due this week and needed a connection to work on them. Drs. are planning for him to leave the hospital around 11 tomorrow so we will be back here just waiting for round 5 and then the LAST one! Small world story-I spent the night on Sunday at the hospital. Around 11 a new nurse came to see Brad. We were talking about sinus drainage. (By the way, chemo has not helped with that at all!) We said something about being here from Irving. She gasps, she grew up in Irving…etc….ends up we were in marching band together in 1978 at MacArthur High School. We were trying to recall names,and such. I was trying to come up with one particular name and couldn’t, she couldn’t either but one of the thousands of times she came to check on Brad or give him some meds, I sat up in bed and said the name. It was cool because I always do my most productive thinking around 3 a.m. but to be able to continue the conversation right then was really great. Then I could mark that off my to do list in my mind!!
Hey…we were talking the other day about wondering how many people are still out there blogging. We don’t have a counter on this thing so the only way we know is if you post a comment. If you are a reader, please post us a note so we will know who is reading. Thanks, can’t wait til August! Tami
June 19th, 2007 at 08:45pm
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My wife says that this shouldn’t be a surprise. She claims that I can’t fail any test I take, no matter what it is. However, I also usually JUST pass it. That being the case, it should come as no shock that my numbers this morning were just over where they needed to be in order to be admitted tonight to begin round 4. My platelets had to be at or above 100,000. Thursday they were 81,000. Today they were up to 102,000. My white cells had gone up to 3,600 and my neutrophils were 2,500. For those of you that are friends and not other cancer caregivers following this, just know that all of this means no delay this time like we thought there might be.
Katie and Kacy are here and just left with Tami to go do some shopping. I’m about to try and sleep as the first night in the hospital is when they don’t even begin the chemo until midnight and then they come in every 15 minutes, then 30, then 45 for vitals so sleep is almost impossible.
I should be out around Wednesday or Thursday if all goes well. This is the round last time that got me so sick in the hospital so keep your fingers crossed that I can actually keep food down this time.
Brad
June 16th, 2007 at 01:26pm
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Tami and I went to get my blood work done this morning and then meet with the Dr. in preperation for going in the hospital for round 4 on Sat. I’m still making the mistake of thinking if I don’t feel terrible, then my numbers must be ok and things are going fine. In all honesty, my last posting of “feeling grrrreat” was true, but probably for a maximum of an hour. Other than that, you just learn to deal with not feeling “right” and you don’t complain.
My white cell count was a little low today (had dropped from 15,000 which is very high to just under 3,000 which is a little low in less than three days) but the main concern is my platelets are not up to 100,000 which is where they want them before they zap you with the next round of chemo. I am up from around 50,000 to 80,000 from Monday to Thursday but the protocol says 100K to get going again. I’ll try and explain it the way the doc explained it to me. With each round of the Hyper CVAD +R +Velcade that I get, it takes the bone marrow longer and longer to recover. It has to be back to a certain level or if they force it, you’ll end up stopping while in the hospital anyway so why not hold off and let your body recover first? He said this is very expected with HCVAD + R + Velcade…actually, just with Hyper CVAD this is expected. Add the other drugs and it is just a lot for the body to recover from and since I’m the first one they’ve done this therapy with, caution is par for the course.
Sat morning I’ll have my blood work done again and they’ll make a decision then. If I’m recovered enough, then in we go. If not, Monday or Tuesday. I really don’t want more delays but this isn’t something you rush so I’m trying to just let the doc do what he thinks is best.
I won’t know more until Sat around lunch so I’ll post then.
Brad
June 14th, 2007 at 03:07pm
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Had my last white cell shot for this round (number 10 as usual) and today went for my blood work. White cells were way up at 15,000! Platelets are still down under 50,000 but they should be up by my next blood work on Thursday. The only real issue right now is the chemo taste. For some reason it is worse now than it ever has been. Water, milk, most other drinks taste sooo much like metal or some other strange taste that I’m not drinking as much as I should and my numbers that deal with that showed it on my blood test this time. So, we went to the store and bought little bottles of everything…trying to find something I like to drink.
This is a busy week but one that will make me feel more normal that I’ve felt in a while. Scott and Barbara (friends from Dallas) are on their way down for a couple of days of R and R with us, our daughter and her old bestest are flying in Friday night for a couple of days and we are heading over to eat with another family going through cancer too that we’ve met down here sometime this week too. Tonight Scott, Barbara, Tami and I are going OUT to eat Mexican food! I can’t wait.
Thursday I see my Dr. in preps for being admitted for round 4 on Sat. I’ll be in the hospital for about 5 days. I’m not looking forward to this one since I got so sick on it last time but for now, I’m just looking forward to the next few days of normalcy.
I’ve been keeping up with a group of mantle cell lymphoma patients on the internet that are also blastoid. While the news continues to seem to improve every week where hear more news, one patient reported today that he went through 5 months of treatment and then relapsed 70 days later. Ouch. That brings you back down to Earth. I continue to be very positive about my results and am excited about what the future brings with the understanding that the good Lord my give me a couple of months of cancer free time or a life time, whatever He sees fit, we’ll accept. Until He lets us know which, each day is exciting.
Sat begins my inpatient for round 4 and marks my half way ordeal. This is the round that got me so sick last time so I’m not exactly looking forward to it but this time we are changing one of the meds to help me keep food down.
Well, here is to a “normal” week.
Brad
June 12th, 2007 at 08:55am
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But I guess that is good. Just returned from the hospital for our daily 3 hours there. Numbers are low so got to be a little more careful right now not to go somewhere to pick up some illness from someone. New nurse today who was a little abrupt. Seemed to think that any complaint was a sign of an allergy! Got some new sleeping med. The Ambien was only giving 4 hours of sleep which isn’t enough when we have to be at the hospital at 7:15. They switched me to Lunesta. Hopefully that will give a full 7 hours at least. Tami is wondering why when I had the full blown cancer all in me that I could sleep like a baby and now I wake up worrying about where we are going to live, how Katie is doing, why the car is making that funny sound, etc.
The Paris Hilton release was BIG news at the hospital. Everyone was complaining about it. Guess it gave a bunch of suffering people a release of pent up emotions. People in all the waiting areas were watching and talking, people in the elevators were talking. Maybe if we all start crying our cancer will go away. Waaa….waaaaaa……..
Just another day here in Houston….hot, muggy Houston.
Katie is coming down from Dallas with her bestest friend ever, Kacy, from when we lived in Colorado for next Friday – Sunday. I’m trying to find us a place on the beach for Friday night since I have about 36 hours between my last dr. visit and we start round 4 on Sat night. Hey, that is my half way point of being finished with my chemo. I’ll be in the hospital from Sat through probably Thursday unless I can’t keep things down like happened last time I had that set of drugs. Anyway, we can stay in a crowded hotel for over $200 (GEEZE) or hopefully we can find a rental house that has been rented starting on Sat that the owners would like to make a little money for Friday night. I’ve written a rental company to see. Keep your fingers crossed. This one night would amount to our “Vacation” for this year since I’ll be trapped here …uh, should I say rec’g the best of care here, until a week before school starts in late August.
June 7th, 2007 at 10:42am
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I’ll address that title last in this post….keep you wondering if I’ve gone nuts or not. Today is day 10 of round 3. There are 21 days in each round so I’m about half way through this one. I had my blood work done today and it all looked better than I expected with the exception of my platelets were down to 50,000. If they get below 10,000 they do the transfusion. I was at over 450,000 last week. This time through this round, I’ve not been near as sick (remember, rounds 1,3,5 are the same so I’ve had this one already) I have been a little sick at my stomach and thrown up a little but not bad. I’ll spare the details but thankfully the plumbing didn’t get stopped up like last time..thankfully. I don’t think I mentioned this but round three was five days (all outpatient this time with a pump that I took home) and during that time I gained exactly 15 pounds! Yep, 15 pounds in five days. It has been five more days since then and 13 of the 15 have come back off. That water weight and steriods are something else. I start the steriods again in two days. I don’t like those things. 10 little pills a day and that’s just the steriods. I take another 10 – 12 per day of other stuff too.
Ok, ok…the colonoscopy thing. As you know if you’ve been following me, all of my tests came back clean including the colonoscopy. I rec’d an email from my oncologist (cancer doc) saying the doctor that did the colonoscopy said I should follow up with them in three years. That may not sound like much but when I was diagnosed two months ago, I didn’t think I had much chance of even being here in 3 years. The sound of someone setting something up, anything, for three years from now is exciting. Strange, I know.
Bradley
June 4th, 2007 at 04:49pm
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Wow! This is Tami and has this been an exciting day!!!!!!!! First of all, it was my last day of school which usually is a relief but this one was exhilarating for me since I was on my way to actually being with Brad for the summer. Of course, the day couldn’t end without a little DRAMA, but it was done and now it is over. Cutting in line has a whole new meaning for me now and when my kids tell me about it at school, I will be much more symphathetic to their complaints. It does hurt your feelings terribly especially when the “cutter” is rude about it. I just thought that would be my excitement….BUT NO! I drive the four hours to Houston. By the way, traffic in Houston starts at 3 for some crazy reason! Got to the apt. so that I could get Jeff, Brad’s caregiver for the week to the airport. Brad felt like poop but wanted to go so we get in the car-that I had just driven for four hours by myself- and take off for the airport 1 1/2 hours before Jeff’s flight time. THEN……..do you feel the drama building? Bam, bam, bam…..while I am driving I experienced my first blowout while on the busy freeway in the middle lane! It was really weird because the sound was more what let me on to something was up than any loss of control. I pulled over, not sure what side was the problem. Of course, the side into the 6 lanes of 80 mph traffic was the bad side. It was a BLOW out…..a huge hole. So here is the scene…. I am blasted tired, Jeff is really close to being late for his flight, Brad is wanting to puke at any minute. Thank goodness Jeff had a AAA card. He called, told them to put a rush on it. The guy came in less than 15 minutes! We will be AAA members tomorrow as well as owners of a new tire! He changed the tire in 2 minutes. I was amazed. I would be still sitting there trying to figure it out if it was just me like it could have easily been!
So….lessons learned today-don’t cut in line, know how to change a tire, always join AAA instead of throwing away that letter like it is junk mail, and there is no place that can be home except with the love of your life who is now cancer free!
Much love and thanks for praying hard (keep it up), tami
June 1st, 2007 at 09:31pm
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