December 19th 2009 update

Hello all :) Since I've been back from Houston (one week today) I have not felt very good. I've been in a lot of pain, primarily in my left leg and lower left back, and I've been very tired. I went to see my GI doctor Thursday in hopes he might be able to address this, since I believe the pain is related to my Chrone's disease, but he wasn't able to help. The good news is that the pain is getting better on it's own, and I have an appointment with an immunologist on December 30. I am extremely fatigued, however. I expected to be tired but it's still very frustrating. Hopefully I will get some energy back soon.

Post Houston Update December 15 2009

Let me begin first by apologizing for not updating more regularly. I know you are very interested in what happened in Houston. As many of you know, for the majority of the time there I was sick in one way or another and didn't feel much like updating. Also, the internet connection in my hotel room was spotty at best and very slow when it was working. Anyway, I'll fill you in on what happened:

I had the treatment (Indium-111) on a Wednesday afternoon. It took about three hours and was administered via my IV port. It was very similar to a chemotherapy session. After I had it I felt like I had undergone an extreme chemo session and suffered the same sorts of side effects (nausea, diarrhea, fatigue, etc.). Of course, the added layer to all of that was that I was radioactive, which led a new twist on managing the effects, and on cleanup. I spent Wednesday night, all of Thursday, and Friday morning by myself in the room. I was very tired so being by myself didn't bother me so much, plus Dad was in the room next door. On Friday I went back over to the treatment center and was scanned, and then released. A technologist came over to the hotel room to make sure it was safe from radiation. Anything that was "hot" I had to seal in a plastic bag and take home. Dad and I left Saturday morning and were very glad to come home.

At this point, there is nothing for me to do but wait until a month from now when I'll start my blood testing regimen at Cedars. I'll be going back to Houston in March or April for another treatment and at that time they will do scans to see if the disease has begun to go into remission. Over this time period (between now and March) my white blood count will drop and I will feel very tired. This is normal and anticipated. I am still very tired and also still in pain in my knee and back, which concerns me a lot. I'm going to see the doctor Thursday to find out what is causing this and if there's anything that can be done.

I'm very grateful for all of your support over this time and as I move forward I will of course keep you posted.

Update Houston December 6 2009

A lot has happened since last I updated. I will begin with the best news of all, which is that the doctors administering the treatment as well as the oncologist he referred me to agree that I am an outstanding candidate for this particular type of treatment, and that the results should be very favorable. The tests that they did to determine if my cancer would be receptive to this kind of treatment came back strong. I don't know the results of the PET scan which was administered Friday, but the other tests that were back indicated a strong 'uptake' of the treatment medication, which means my cancer cells will absorb it well and effectively. This is great news because it means I have an excellent chance of a favorable result. The PET scan results will play a part in their prognosis, but everything points to a very good result.

The bad news is that I have been in pain almost continuously since Friday. Thursday I had to take a large dose of predinsone, a steroid, to contradict the allergic reaction I have to iodine contrast. The steroid took care of that reaction but I've been in constant pain ever since. Friday I had to go over and get Demerol shots to deal with the pain and I've been on painkillers since as the pain has not gone away (it has gotten less intense however). I haven't felt much like doing anything (not that there's anything to do here anyway). We did drive to downtown Houston yesterday, which was nothing special. It snowed here Friday (for a So Cal boy, that was a highlight), and it's now raining heavily. It doesn't matter because I don't feel like doing anything anyway.

I'll keep you posted as to what happens between now and Wednesday.

Houston Day Three December 3 2009

Not in the best of moods as I write this because I am catching a cold and feel like crap. The weather here is cold; in the fifties during the day and in the forties at night. It also poured here yesterday. To give you an idea of what they are expecting, there could be snow here by Friday. I said it: SNOW. Not what a So Cal boy is used to.

I'm frustrated because I have to take a test where they administer an iodine contrast and I am allergic to iodine. I have to take steroids to counteract the effect and steroids have their own side effects. I have no choice but to do it; if I don't my treatment won't happen. So, that's that.

My impressions of Houston so far: Houston is like Los Angeles with no soul. It consists of strip malls, freeways (tollways) and office buildings that spring from the ground like weeds. One can see why George Bush made this home: a souless perversion of the American Dream, where the car exhaust from freeways replaces the smell of flowers and office buildings are trees. This is what America would be like if Republicans ran everything.

Sorry, I'm not feeling too well. More of an upbeat post tomorrow.

Houston December 1st 2009

My first morning in Houston, sitting at the desk at the Candlewood extended stay hotel :) Leaving in about an hour for my first full day of tests. Had a small test yesterday when we arrived, but today begins a week of intense scans and tests in preparation for the treatment next week.

The flight was good. We didn't have a lot of time to spare at the airport so all I had time to do was get a pack of gum and water before getting on the plane. The flight itself was good, no problems. When we got to the airport in Houston, Dad and I got separated for a short time. My phone ended up broken; I couldn't turn it on to make calls, so I was walking to the Customer Service department to have Dad called when we found each other. Then, as we walked to get our bags, Dad discovered he lost his hearing aid, so he had to go back and look for it (he found it eventually). All of this was complicated by my phone not working and Dad's foot giving him problems (Houston's airport is large and there's a lot of walking). It worked out though and we ended up driving to Westchase to get my first test done.

The first test was a MUGA test (not muggle, Potter fans) designed to measure my heartbeat and overall heart effectiveness. It took about an hour. We then went to get my phone fixed (thanks Verizon) grocery shopping, and back to the hotel, where we both were exhausted.

I don't have much of an impression of Houston as I haven't seen much yet, but so far it's what I expected. I'll continue to post here nightly or as the situation calls for. Thanks for all your good wishes and love.