This part of the journey is over! I’m back in Hurst (Ft. Worth) after meeting with the Dr. and having my CVC line taken out. They also gave me a longer lasting white cell shot just in case my numbers dipped too low first of next week when I’m back with those pesky 5th graders. The doctor said that he had most of the test back and that they all showed that there was no lymphoma in my system. He hadn’t rec’d a couple of the CT scans but he said he was 99.9% sure they would be negative too so he let me have the CVC line out instead of us waiting in Houston for another day.
I was surprised to here that other than having my blood counts checked weekly for the first month, they told me there was nothing really different I should do than I did before the cancer. No special diet, exercise or supplements. The quote I rec’d was “go live life”. Sounds like a plan to me. All pills stopped today, including the heart pills. I’m down from a high of just over 20 different pills a day now to 1. My heart function that had dropped from 65% to 50% after only my second round is back up to 59% (normal is 50% – 70%). The doctor was happy with that so we are too.
We did take a few minutes to talk about relapse just so I would be prepared and I was glad in a way and sad in another way that I won’t be able to do this HyperCVAD/Rituxin/Velcade treatment plan again. Next time it would have to be something a little less harsh. That is good in the fact that I really don’t want to go through that again but bad in a since that you feel like you always want to have them throw the strongest stuff at you they can.
Time to enjoy the new house ( it’s a little bigger than my one bedroom apt) and get some rest. I’m going to go up to school late tomorrow to say hi to everyone and then I start back full time Tuesday.
Goodbye Houston
Brad
August 30th, 2007 at 08:43pm
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It is hard to believe, but my five plus months here at MD Anderson are coming to an end. Tami flies in tonight and after visiting with the Dr. tomorrow and having my CVC line taken out, we’ll be on our way back up to DFW for me to get back to life again as I knew it before this thing called cancer. The only thing to stop us now is if the cancer has returned. I know that is a possibility but I just can’t see that happening. Dr. Romaguera will give us the results in the morning…..did I just say “stop us”. Let me rephrase. If the cancer is back, it might slow us down, but it won’t stop us
It may not make sense, but I’m really going to miss these friends I’ve made over that last few months. One would think it would be depressing, sitting up at the hospital for hours each day with a lot of sick people, many of whom will most likely only see one or two more birthdays at most. However, I’m not sure I’ve been around a more upbeat crowd in years. It has to be something about putting priorities in order. (Syndi, you’ll never know how much your friendship meant to Tami during this time…something about having another caregiver to talk with helped more than words can say ) There is such a positive attitude coming out of such a sick group of people. Oh, and if you ever feel sorry for yourself about anything, just go to the 9th floor of MD Anderson where I lived for so many days of my stay. The lymphoma floor shares space with the kids unit. Go up there and see the smiles on those kids faces who are fighting for their lives. If you can still feel sorry for yourself, you need more help than they do.
I have to take a moment to thank all of you that have supported us in this fight. Some financailly, some through giving blood and some through prayer. The first thing I remember telling Tami when I was diagnosed wasn’t about my health, it was that there was no way around us going bankrupt from this. Thanks to a lot of you out there, that hasn’t happened. From my Dad and Betty, to my sisters and their kids, aunt susie and family, my Farine and Lively families and my FBC in Evergreen family, people helped to keep that from happening. I was able to concentrate on getting better and not worry so much about where the money was going to come from. It is still going to be a challenge since we have to return to Houston so often to be retested but I know now not to doubt.
I keep thinking of a song we sang at church many years ago. The words seem to be perfect for our lives the last few months. “God will make a way, when there seems to be no way. He works in ways, we cannot see. He will make a way for me. He will be my guide. Hold me closely to His side. With love and strength for each new day, He will make a way. He will make a way”
I’ll go back to something I said at the beginning of this blog back in March. I know God will take care of us because His word promises He will. Again, that doesn’t mean He is promising to heal me of this cancer. It just says what the song says…that He’ll make a way for us to handle what ever comes our way. God has seen fit to take this cancer away from me for now. That doesn’t mean it won’t come back next month or next year. The doctors say this kind of cancer most likely will return, it is just how soon. They haven’t yet been able to find a “cure” for Mantle Cell Lyphoma. That’s ok. Until it returns we’ll live life to the fullest. If and when it returns, we know not to doubt God or the incredible friends and family we have…He’ll make a way.
Signing off for the last time from Houston
Brad
August 29th, 2007 at 10:24am
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I had my blood-work done again today and it looks like things are progressing nicely. My platelets are still low but are moving up without having any more transfusions so that is good. The doc I met with today seems to think that we’ll be ok to get out of here as long as my CT scans and bone marrow results show no evidence of active cancer.
Today was the first day of school and I sure did miss it. Angelica, you can have first grade..no thanks. I’ll stick with 5th graders.
Tami flies in on Wednesday night. I’m ready to see my family again. Katie isn’t getting to come down since she just started her junior year of college (wow, is she that old?) but I’ll get to see her Thursday night if they let me out of here.
Now for the long part. I have nothing on my schedule for the next two days and my truck is in the shop. Guess I’ll just sit here and let my bone marrow do it’s work.
Keep praying. The journey is no where near over yet.
Brad
August 27th, 2007 at 05:14pm
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It’s Sunday, August 26th, and tomorrow is the first day of school. I just wanted you guys to know that I’ll miss being there with you more than you can know. I’m still hopeful that I’ll return to school next Tuesday, Sept 4th, but we’ll know more after my final meeting with my oncologist on Thursday, August 30th.
The last two days were just short trips to the hospital for neupegen shots. Tomorrow is the fast track visit with blood-work so I’ll have more information then. I’m really hoping for platelets at least 60,000 but we’ll see. Anything less than that might delay my return. Friday they were only 19,000 after getting infused with platelets on Monday and Wednesday.
I hope tomorrow goes well for everyone going back for their first day of school. I can’t wait to have my first day back.
Brad
August 26th, 2007 at 05:36pm
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Numbers looking better today. White cells more than doubled. Platelets came up but not much. I’ve had two transfusions of platelets this week and they have come up from 5,000 to 16,000.
It’s funny how everything is relative. I ran in to a guy that has been down here with me getting treatment since probably April. He was very concerned because his platelets were so low. When I asked him how low they were, (thining he was going to say 3,000 or so) he said they had dropped to almost 30,000. It reminded me of telling a friend down here that mine had dropped to 10,000 one time ( and I thought that was terrible) and he told me his had been sitting at 2,000 for a few days. Why is it so comforting to know that no matter how bad you feel or how bad your numbers get that someone else has had it worse?
Bone marrow went just fine today. Why they don’t tell you up front when you get here that all you have to do as ask to have this done while knocked out is beyond me. The nurses were even laughing about it.
I made the call today to talk to the charity that runs this apt and talked to her about moving out. That felt good to make that call. I haven’t enjoyed paying more than $1,000 a month for this place but at the same time, it has been a God send. I’m not sure how people made it down here for 6 months at a time when they had to rent a place, furnish it and pay all utilities before these church charities started this ministry.
Brad
August 24th, 2007 at 03:16pm
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My last test is tomorrow morning at 10 as long as my blood work is back up. I have it taken around 8 am and then as long as everything looks ok, the bone marrow will be over before 11. My next test should be IN NOVEMBER!
I’ve felt ok most of the day but had a couple of hours when things were “just not right”. Can’t explain what was wrong but could just tell something was. It’s 10pm now and I’m feeling much better. Tami is flying down here in less than a week to bring me back home (we hope) so that is keeping me going.
Off to bed for now. I’ll post after the bone marrow tomorrow.
Brad
August 23rd, 2007 at 10:10pm
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I went to the hospital today around 12:30 for what I thought would be a normal two hour day. It is a little after 11:30pm and I just got home. Numbers still aren’t coming up and in fact the red cells went down too much…so, another bag of platelets and two bags of blood. Fun, fun.
I have my CT scans beginning at 6:50 in the morning..that’s right, 6:50AM! Chest X rays after that and then off to get another shot of neupegen and then a CVC dressing change. Oh, that reminds me. They took a culture today from it thinking that I may have an infection in it again. Geeze, just take it out!
Well, off to try and get some sleep before drinking that wonderful barium tomorrow
Brad
August 22nd, 2007 at 11:43pm
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I was hoping to avoid the fever and such with this round but it showed up today. It has only gotten to 100 so I have avoided the ER so far but my heart rate jumped from its normal 70 to 112 when I went to the Dr. today and this evening it is sitting around 130…I also had the throwing up problem this afternoon. This happened with this round back on round 2 and after platelets I felt better. I rec’d platelets yesterday but feel worse. I will be very interested to see if my numbers go back up tomorrow when I have my blood work done.
I can’t wait until this is all over and I can feel normal. Shaylor, you there yet after your SCT? Please buddy tell me you do!
I’ll post again tomorrow after I get my results but that won’t be until around 5pm. .
Brad
August 21st, 2007 at 08:16pm
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My numbers really went down today. My platelets were lower than they’ve ever been at 5,000. Nuetrophils that they want at 1,000 to go out in public without a mask are down to 20. I had to go get more platelets this afternoon and we’ll recheck things on Wednesday.
I had the heart test today but won’t have results until next week. The platelets MUST come up and stay there or they won’t do the bone marrow tests on Friday. If that happens, we’ll be delayed again on when I get to come home. We already have Tami’s airline ticket to come down the night before I get released to drive back with me so that would cause problems.
My sister left today after lunch and my dad and step-mom come down Wednesday so I’m stuck in the apt alone until Wednesday since my numbers won’t allow me to go out. That might be nice…we’ll see.
Brad
August 20th, 2007 at 07:06pm
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I had blood work done again on Friday and the numbers were mixed. White cells went up (due to the neupegen shots) but my platelets went down from 95,000 to 30,000. I had some bleeding yesterday that I shouldn’t have but things are better today. The main issue has been a headache that just won’t go away even with two sets of pain meds. It is on it’s third day today so I’m hoping it goes away soon.
I have tests all week this week. Heart tomorrow, CT’s and chest X-rays on Thursday and the bone marrow on Friday. After that, I have my typical blood work next Monday and then nothing until I meet with the Dr on Thursday to hopefully get me “get out of here” speech.
Keep the prayers coming….we really need these tests to come back clean!
Brad
August 19th, 2007 at 11:31am
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Tami and Katie just drove off to head back to Dallas. Wow, it sure is quiet in here. After a few hours of this, it might prove to be too quiet. Got my numbers today from today’s blood and yesterdays. Numbers sure took a dive overnight. White cells just over 1,000 and my platelets fell from around 130,000 to just over 90,000 just since yesterday. No worries though since that is to be expected at this point in the round. I’ll continue to have my numbers heading south for another two or three days where I have be careful where I go but then by Sunday they should be heading back up….however, this is where after round 4 (this same set of drugs) that they didn’t come back up so we are praying for better results this time.
First tropical storm of the season for the Houston area was named today (ERIN) and should be hitting just south of us tomorrow. My sister is driving in tomorrow in her new car so pray she makes it safely and with no nicks from any storm damage.
Enough for now. 15 days from now….FREEDOM!
Brad
August 15th, 2007 at 11:51am
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Tami and I are at MD Anderson awaiting my last real bit of chemo. It is that three second shot I get at the beginning and end of each round of chemo. Other than the white cell shots, there really isn’t anything left after today except the final tests which are all on two days, Thursday the 23rd and Friday the 24th. I see the Dr. the next Thursday to get the results. Presuming that I am still disease free, I’ll head straight to have my CVC line taken out of my chest and straight to DFW. I’ll be released to return to work the following Tuesday (since Monday is a holiday). My current understanding is that there will be no restrictions on me with the kids other than just being smart about staying away from obviously sick kids, washing hands often and other common sense things. The weekly or every other week blood work will be required until I return in November for my next round of tests. If my numbers stay up during that three months, then those will stop too.
I’ve tried three times to write more but each time it doesn’t show up so I’ll stop for now this time and try again later.
Brad
August 14th, 2007 at 04:47pm
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I wrote a little too soon yesterday about Brad feeling ok. He went down hill most of the day. Didn’t eat until late last night and he wanted McD’s chicken nuggets. He is such a gourmet eater! Ran that nasty fever that he couldn’t get rid of in round 4, but he had a pretty good night and around 4 a.m. was clear of fever. They just came in and said he could go! We have to get another push of that miracle drug on Tuesday or Wednesday, but that is a three second thing. Now our prayer requests are: Brad’s numbers respond well and the final tests can be done around the end of Aug., Katie and I make the move with little drama, and we figure out what God has in mind for us to do with this cancer story that we now have.
Congrats to Randy (my eldest brother )and Kathy! The wedding was so sweet even though it was 118 degrees. It was a nice diversion for awhile. Tami
August 12th, 2007 at 10:26am
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It is Saturday a.m. here at the hospital. Brad is halfway through with this round of yucky medicine. He is not having as hard of time as he had the two other times he had this particular combination of meds. I am not saying he isn’t sick at all….just not as bad as before. He has a headache and is nauseated but limited yaking has taken place! He just rolled over and told me to write that he was keeping focused on the fact that in three weeks he will be home. Speaking of going home…it just hit me last night while telling one of his favorite in-patient nurses goodbye that this is our last time hopefully. All of you should be proud of Brad-he represented well. The nurses loved him, said he was easy to deal with, he made them laugh,and he was a good boy all of the time he was in the hospital. It can’t hurt that we gave them fudge the last time he was in for 12 days!!! He has another dose of this bad boy medicine at 1 and then again at 1 a.m., then if his blood work comes out ok in the morning we should be heading to the apt. before lunch time.
Katie and I are anxiously waiting for Wed. when we will get to move back to the HEB area! Brad is going to have his sister in to babysit him and then maybe the other sister. He thinks he can stay by himself, but watching him stumble around at night is when I start to think that maybe that isn’t such a good idea! We are going to the new digs on Wed. to REALLY check the house out. We were so excited with the general picture and condition that we realized we didn’t really look at it so good. We assume there are toliets in the bathrooms, sinks and drawers in the kitchen! We will check it out and then go spend the night at mom’s house where the movers will meet us to go to the storage unit the next morning. It is so exciting to think we will be sitting on our own couch and using our own towels and sheets in just a few days.
We will let you know when we get released from the hospital this last time! I am sure we will have a few tears but a little whoop will go out too!!! tami
August 11th, 2007 at 09:34am
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As I’m writing this, I’m waiting on a phone call from the hospital saying that my room is ready and we can head up to admissions. It is hard to believe this is the last treatment. It’s one of those “It seems like we’ve been here years” and yet “it seems like we just got here yesterday” kind of deals. To say this has been an interesting journey doesn’t do it justice.
Tami and I met with my oncologist today and all we wanted to talk about was how soon can I get back to work and get on with “life”. He reminded us that this last round that I did so well with isn’t the one that knocks you down for so long…that is this one that we are going in tonight for. His basic answer was that IF my numbers do well after this chemo that we can go home on Tuesday, August 28th or Wednesday, August 29th. He’ll probably release me to return to work anytime after that. I was hoping that once I was back that we could forget this cancer thing at least until my next set of tests in November. Turns out that due to me working with elementary age kids, I’ll have to go in for blood tests either every week or every other week for the first three months or so. Some people’s numbers go back down several weeks out from chemo for some reason. He said it normally isn’t too big of an issue but if you work with kids that are under 12, you just have to be more careful to avoid kids that you can tell are sick. If my they catch my numbers going down, then they can put me back on white cell shots again to help.
Tami just set an appt with local movers for next Thursday morning so that will be done before I ever get there. My sister is coming down after Tami and Katie leave to stay with me a few days to make sure I’m recovering ok and then I’ll be here for a few days alone until my last day here when I have the full day of final testing. Tami will fly back down for that day and then drive back up with me when we leave Houston for good.
That about sums it up for now. Tonight is the night I do not look forward to as they don’t even begin chemo until around midnight or 1 am and then you have vitals every 15 minutes, then every 30 minutes and so on….forget getting any sleep the first night. Hope there are some good re-runs on tv.
Brad
August 8th, 2007 at 02:59pm
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God remains in control ! HE found us a house this afternoon! I won’t go into all the details now but just like when this roller coaster ride started in March-this story of the house will send chills down your spine OR it will just confirm to you that His plan is the ultimate plan. Yesterday around 5 p.m. I called my regular (in Hurst) hair stylist to see if she could work me on a Sat. First of all, you girls, should be laughing at that call anyway. What good hairstylist can work someone in on a Sat?!? Her 9:30 had just cancelled minutes before leaving a space for me. (God even takes care of hairstyles!) While driving down the street to the salon, I saw a sign for a house for lease. Nice houses, great trees and yards, no cars lined up on the street-just the kind of place we like. I turned around in the front of it with 10 mintues before my haircut and instead of just writing the number down, I called right then. Here is when it gets funny (as in a God-thing!) The lady that answers says “Hey there, I was just fixing to call you!” I said-”Really? You don’t even know me! I was calling about the house for lease.” She was embarassed, said my number looked like her friend’s number, etc. I took it as a sign and told her so, that this might be the right house! I talked to her, wrote some info down, called Brad on the way to the shop, got the haircut, went back by and called her back because I forgot to ask a few more questions. Well…that was at about 11. We made an appt to go back at 2 and at 2:45 we had a house!!!!! It is perfect. Katie has her own side of the house with a huge bedroom with a bath and a private entrance on the opposite side from our bedroom-there’s the apt. she wanted to get! We can take our pets…(no worries Heath….Dixie is yours now!) I can actually have my house plants back that have been babysat by sweet Ann from school. We can get our stuff out of storage and move in before Brad is ever released from MDAnderson. Which will be a good thing since he is pretty much a weakling right now and doesn’t need to do a thing with this move. Here is the really big GOD thing- the landlord lady lost her husband in the middle of the night three years ago. When I told her that we needed to rent for 2 or 3 years to see where our cancer journey takes us she indicated that she would write into the lease a clause that would let us out of the lease if Brad relapsed and we had to do the entire “Houston” thing again. WOW! That is a rare find-a great house, a perfect situation for Katie to stay with us but have some indepedence too, and no long term hanging over our head commitment just in case! Like I said…..God is in control. He knew what we needed, made sure we were really discouraged from our house hunt yesterday, and then placed the “ordained” house right in my path on the way to a haircut. Man….He is good.
Will get details of the address, move in date, etc. tomorrow when I met with my new friend “our landlord” to sign the lease.
August 4th, 2007 at 04:20pm
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We are in Dallas for the weekend looking at houses to rent for when I get out. Man, buying is so much easier. It shouldn’t be that way but there just isn’t much to rent around here that isn’t junk. I should also be feeling stronger each day …I’m not. I actually feel a little worse each day. Not sure if it is just stress from not finding someplace to call ours when we get back or if something is not quite right. I don’t see the dr until Tuesday so I guess we’ll just wait and see. At this point, I just want to get it started so I’m at least under their care in case there is a problem. Plus, that means I’m that much closer to being done.
We are going to stop by school Monday morning and try and say hi to everyone that is there and then we’ll head back to Houston for one last time….well, at least until December for my first checkup.
Until then
Brad
August 4th, 2007 at 08:49am
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