Rec’d a call today before lunch that after my platelets on Friday, they’ve actually gone DOWN from 17,000 to 15,000. So off I went again. We’ve got to find out what is causing this. Tomorrow I’m calling the transplant doc in Houston to get his thoughts. I black and blue all over now from bruising. Other than that, feeling ok with a little lack of energy still.
Oh, they said my potassium was very high and that can mess with your heart. Might explain why I normally beat in the 80’s but am now in the high 50’s.
Brad
September 29th, 2009 at 09:08pm
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I knew I hadn’t felt good the last couple of days but on the way home from school yesterday the doctor’s office called and said my platelets were down to 17,000 and I had to go straight to the hospital for a transfusion. That was at 4pm. We left at 10:45 last night. At least I didn’t have to spend the night.
These new meds they have me on are having me feel sluggish to say the least. Hopefully that will change soon.
Brad
September 26th, 2009 at 08:02am
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After a quick flight to and from Houston yesterday, I’ll try and explain what the latest is. I knew that we had stopped my anti-rejection drugs earlier than expected back in April. I didn’t remember that it was to try and encourage Graft Vs. Host Disease GVHD because then you get a helpful effect (Graft VS Tumor) if you relapse…which I had done. So they wanted me to get GVHD. Well, I did. Step one, successful. What I didn’t know is that now that the steriods I have to take to cure the GVHD are working and I’m slowly lowering their amounts, I have to once again begin taking all of the anti-rejection drugs again. When I asked for how long….the answer was about 4 or 5 months. Geeze, these things are several hundred dollars a month. Glad I’m back to work.
So now that we’ve got the problem of GVHD that we wanted….and are now treating it to get rid of it, we don’t want it back again. Make sense? Me either.
The place where they had takent he biopsy out of my foot has a slight infection in it but no big deal. Other than that, the doctors assured me we are on track and everything is looking good. I wish I could say the cancer is gone but it’s not. I can say that we don’t think it is growing and that is obviously a good thing. My sister’s stem cells appear to be trying to fight the cancer which is exactly what we wanted. Now I just have to take my meds and try not and get sick. These meds lower my immune system even more but then you are on anti-virals, anti-this, anti-that every day trying to make sure you don’t get sick. It’s a balancing act.
I’ll still continue to get once a month day long treatments but have decided against flying to Houston for those as the flight, taxi’s, etc just are too expensive. I can take one day a month and get it done here in Irving.
Enough for now. Thanks for continuing to keep up with us via this blog and if you see Katie, tell her happy 22nd.
Brad
September 19th, 2009 at 05:55pm
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I made my quick trip to Houston on Sat. Left my house at 5:30 a.m. in the rain with NO WINDSHIELD wipers. They just wouldn’t work. I should have known. I get to the airport and we board on time at 6:30 only to hear that there was a “mechanical problem”. Turns out the mechanical problem was one of the windshield wipers wouldn’t come on. It was all I could do from saying “Hey, that happened to me this morning” but then the vision of a mob of angry passengers headed for my seat kept me quiet. 25 minutes later we were up in the air.
I arrived at the hospital 10 minutes late for my 9am appt. At 10:45 am, they finally called me back to my room. And there IT was….the dreaded inflatable bed that doesn’t stop inflating and deflating ALL OF THE TIME. I’ll be sitting here six hours getting treatment listening to this bed go up and down. GREAT. I had them show me where the main plug was and occassionally I would just unplug it.
MD Anderson was putting in my IVIG so slow ( 120 ml per hour) that it was going to take a full six hours and I would miss my flight. I talked them in to raising the rate to 170 and ended up getting out early. Made it to the aiport with no trouble only to get to the gate and hear “I’m sorry, but this flight to Dallas has been changed due to a mechanical problem”. ( another windshield wiper perhaps?) and we are bringing in another plane.
Two flights on American and two planes that had mechanical problems. Not a good %. Oh, I can’t just pick on American. I sat at the food court at Hobby and you can watch Southwest Airlines workers work on the plane. Obviously, the luggage handlers are really training for the shotput. I kid you not, even when they could have more easily turned around and LAYED the bag on the ramp, they turned and heaved it. It must be part of their workout plan. I kept thinking of all of the hairdryers and such that will never work again after those drops.
I finally made it home last night and am glad to be here. I’m thinking of changing my plans to having this done here from now on. That was just too much and I could easily see missing my chemo with more plane screw ups or more bad weather.
Off to bed for school tomorrow.
Brad
September 13th, 2009 at 07:17pm
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So I headed to Houston yesterday just hoping to get an answer. Almost any answer would do. I could barely walk (no joke) due to sores on the bottom of my feet. I had a rash on my feet, legs, arms, hands and even fingers. It had been coming and going for four weeks.
When the doc saw me he advised me I did have a fairly severe case of chronic Graft Vs Host Disease. Question is what triggered it. I was sunburned just before the came out so that could be it. My body could be fighting the transplant or the cancer might be back and my new cells are trying to fight it.
They’ve put me on medicine (steroids) for the next few months and will see how I respond. If I’m not much better in a month, we’ll rescan for the cancer.
The good news is my feet are already better just overnight. Last night I couldn’t walk from one room to another. Today I’m up walking with just minimal pain. We’ll see if that holds.
My weight continues to fall. I started a few months ago at 330. As of yesterday, I was 285. I just can’t eat much. Great weight loss plan if you have the extra to start but at some point this needs to stop.
Enough for now. Looks like we are on the right path.
Brad
September 3rd, 2009 at 09:10am
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