Once again here we sit at MDAnderson for another holiday celebration. We have been here for Christmas Day, Thanksgiving Day, New Years Day, Fourth of July, Memorial Day, Easter, Mother’s Day, Fathers Day,Lincolns Birthday. ( The reason I know about Lincoln’s birthday is because we got a heart shaped pillow for Valentines and when the man asked Brad what he did he thought it would be funny for the teacher to have the heart pillow made out of Lincoln’s pictures! Seriously, they make fabric like that.) I think we have missed most of the Jewish holidays in Sept/Oct but that is all (sorry Adam and Arielle)! I got a cute little flickering pumpkin in the gift shop on Friday that was 75% off! That is our decoration plus the glow in the dark bracelets that Volunteer Services had in Brad’s trick or treat bag. Those are on his chemo pole that isn’t putting in chemo this time just other assorted iv drugs. His cousin Bobby just walked in with this really scary costume on…oh wait..that was just his normal look. Believe me…he is scary. Looks like he could beat up anyone by just looking at them, but like a teddy bear inside. He loves Brad. It was good to see him. Today the doc said he should be feeling much better in 2 or 3 days. Doesn’t mean he is getting out but we will see. Thanks again for keeping up with Brad and his trials with this awful thing called cancer. If it hasn’t affected anyone in your family or circle of friends be thankful. It is terrible. The worst of all Halloween tricks.
October 31st, 2009 at 06:17pm
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Finally! We got in to see the doctor and bam…Brad is admitted to the hospital!! I just knew that as soon as they saw him they were going to get going. It is so nice to have that sort of confidence when you walk in a hospital. No wonder they were adverstising that they had been declared the #1 Cancer hospital in the US by some big name magazine. The official diagnosis is: He is all messed up. REALLY? One med is counteracting another, another med is messing with his kidneys and liver, toxic levels of another one in his blood, and he has a flu like virus called cytomeglavirus or something like that, but the meds for that mess with your kidneys and liver!!! Dr. Q says all of this can be fixed but he wants to watch the results down in Houston and not play this game with the doc in Irving. Like I said before…FINALLY! Also he will get some physical therapy to rebuild his muscles while here. He needs that for sure. Right now he is in the ER waiting on a bed in the big hospital. There were 48 people in front of him waiting at 7 but they were taking them out of the ER two at a time. He will probably be in there all night until they discharge more patients tomorrow morning but at least he is already getting cared for. Just no bed for me so I came back to the hotel we stayed in last night. I really don’t remember what a full night of sleep is like since Brad has been so bad lately. Plus no school for me….this feels like a vacation…not really.
Funny things today…I got out mid morning to get some things and the radio had these two songs in a row. “I Want A New Drug…one that won’t make me sick!” and “Hit me with your Best Shot”….I thought those were quite ironic. Obviously I had an oldies station on! Thanks for the phone calls, texts, emails and prayers. I think we might actually make it past this bump in the road. tami
October 28th, 2009 at 10:11pm
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in the slurp of the stopped up drain. For Brad’s faithful readers, this post has been written by Tami. It will be a long one I am sure, so if you need to know the outcome without reading then read the last paragraph!
We are beginning on week 3 or 4, I can’t even remember, of what has been the most awful time Brad has had ever. He looks right now like I expected him to look when getting chemo crammed in his body or after a stem cell transplant. He looks sick. I guess I have been spoiled into thinking that we might kick this thing and that I wasn’t going to have to face life alone, but the past few weeks have convinced me otherwise. Then I get mad at myself for thinking that way and realize this seems to be just a medicine issue and not a cancer issue. Then I get mad at why this whole terrible event is happening. Just a few weeks ago Brad was happy to be back at work. Being an inspiration to people who thought they were having a bad day and then they would see Brad killing himself to make it down the hall to his class.
Then Brad went to MDAnderson to find out that he had to go back on those anti-rejection meds for awhile. Within two days of starting the pills, which WITH insurance cost around $1,000 a month, he started to feel awful. His muscles have atrophied to the point where he can’t get himself up. He is walking with a cane. He can’t pick his feet up. He doesn’t eat. He has lost 70 pounds since August. He sleeps all day. He doesn’t know what time it is most of the time. This is a great plan for $1,000. NOT! The docs here in Irving won’t make a move without MDA docs suggesting it. He has had to have plateletes at least 4 times in the past few weeks. This week we are headed to MDA for some answers. I need them to see him. They were always so proud to say that he was “in treatment”…their poster child for looking great while you have cancer. I think when they see their poster child they will finally act on some remedy for this situation.
As you can imagine, when Brad has moments of being lucid he is wondering why he is having to stay here on Earth and put up with feeling this way. I have wondered the same thing too and then I think about it could easily be just the meds doing this. His blood sugar has gone from in the 500’s to the 50’s in two weeks-both of which make you feel really bad! So we start with docs orders taking half this med and increasing this one by 1/4 and then spin around 3 times looking over your left shoulder and spit out half the dose but make sure it hits the toilet….oh wait…..I am just reporting how the directions feel. Potassium’s high, sodium low…wait sodium now high….what do we do about that?
In the meantime, life for me is work, grad class work which is just about to kill me this semester, take care of Brad. Then on Thursday night I get a call saying my mom had fallen and was on her way to the hospital by ambulance. I grab my book and computer because, of course I have two papers due before midnight and it was 7 pm when the call came! My mom had fallen between the house and her car while trying to get in he car to go eat her dinner. She broke her eye socket and her sinus wall on the left side but the worst part was she sat in a puddle from our horrendous rain storms for 2 hours before she got her neighbors attention with her panic button on her car key. Yes…the first question is why didn’t she call with her cell phone. It was plugged in charging on the kitchen counter where it has been charging for about 3 weeks! Anyway, got her back home with new orders to use her walker-big bad no no in her book and carry her cell phone. As I was driving to the hospital I called a friend and said, ”I know that God doesn’t give you more than you can handle.” Her immediate reaction was.. “He must have a lot of confidence in you then.” But I said…enough!!! I can’t do much more. Here is where the stopped up drain comes in.
Friday morning while I was getting dressed, the sink was filling with water as I brushed my teeth. I remembered then that I needed to get some Draino and had forgotten. I started thinking when I was going to be able to do that since I had class Friday night until 10 and then tons of projects to do on Sat. I wasn’t in panic mode just thinking when SLUUURRRPPPPP down went the entire sink of stopped up water. I looked up, said thanks, and then said…but I need some help with these big things. But at least I had the reassurance that He still listens and speaks.
Friday at school was a great day. A mom showed up with a surprise armload of flowers for me just because she thought I could use a pick me up. I got to class and one of the assignments was taken off the list AND I found out that next semester they won’t be offering any class that I need!!!! That was about the best news of all! God is still good all the time and all the time God is good.
Now for the Reader’s Digest version- This has been the most awful 3 weeks of this whole cancer journey. I am at my wits end, Brad is giving up, Katie is sad to see her daddy looking so sickly, but we are all still here and hanging on to hope. Pray that the doctors in Houston will see their model patient not looking so modely…and come up with a plan!
Thanks for reading. Know that Brad would have written but he can’t because his hands are too shaky and he can’t really think for any period of time. He did request that I post today in between writing papers!!!! Tami
October 25th, 2009 at 06:35pm
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I haven’t been feeling too well over the last couple of weeks. I went back today to finish my transfusion and found out my sugars are 389 (way over diabetic numbers and explains all of the shaking) and the small incision on my foot where they took the biopsy to confirm GVHD that had a small infection now has MSRA.
I’ve taken a few days from work just to get some rest in but now I’m really glad I did. I’ve got to get to feeling better soon.
Brad
October 9th, 2009 at 01:58pm
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I had to go in at 3 yesterday to get ready for more platelets ( they were down to 14,000 ) and as of 8 pm, they still hadn’t been delivered and were still two hours away. Knowing no rest was coming my way, I discharged myself and rescheduled for 10 am this morning. My platelets will be here and waiting for me….and I’ll get some rest.
I can’t wait to hear from my stem cell doc on what they think is causing this. We have to stop this. Thursday I have an ALL DAY transfusion where I do back to back IVIG and Rituxin. Either one of those is considered all day but I’m trying to get them in together to not miss any more work. I’m going to be worn out but maybe I can make it an easy day at work and just make it to the weekend where I promise to rest the entire weekend.
Brad
October 6th, 2009 at 05:51am
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