February 17, 2006

Dressing Removed

I had my appointment today as planned with Dr. Rogers at Hopkins. I was scheduled for 3:00 and got in at about 4:30. The wait was pretty brutal given that I only sit up for short periods right now. We just walked in the door at about 6:20. Now for the update.

The dressing was removed as planned, which was essentially just a peeling of the plastic bandage. I could have done this part at home, but this gave Dr. Rogers the chance to look over the incision, which is healing normally. I also received a copy of the biopsy but of course had already read it and posted it here. I was hoping to learn more about this but I am coming out with exactly the same information with which I went in unfortunately. To review, I have testicular cancer of the seminoma type and only of that type.

So, what's next? I get followup bloodwork next Thursday and a CT scan on the 3rd of March to determine whether or not the relevant beta HCG marker is back to normal. The CT scan will be reviewed at a followup appointment on the same day. I am also being scheduled to see a radiation oncologist in the interim so that I can be briefed on the process of radiation therapy, which, if the marker has returned to normal, will progress thereafter for 2 to 3 weeks as often as every day or as few as several times per week. If my marker has not returned to normal we will then have to explore the possibility of chemotherapy or further surgery, as that would be an indication that the tumor had metastasized into an area like the lungs or brain.

My efforts to obtain even the limited information presented here could be likened to the pulling of teeth, so I have little sense of what is anticipated regarding my beta HCG level. I get a slight indication that a positive marker would at this time be unexpected, but at the same time the words really and very high have been used each time the marker level has been discussed. (For the record, my beta HCG level is 290. It should be undetectable.) It turned out that the tumor size was largely irrelevant, but I do not know about marker levels. If any of you have experience with this, please give me some indication. It's a frightening thing to have a really high marker indicated. I wish this guy was a bit more informative and up-front with his information, that's for sure.

I am totally out of gas, but I am also really proud of myself, because I had a moment just after the appointment that, to use a tired sports metaphor, you might call "gut check time," and I passed it at a time that I think almost everyone would fail. This surgery has me stretched thinner than a wire (my legs are shaking as I write this), and the appointments and attached waits are much akin to repeated blows to the abdomen while stretched out on a rack, but I am going to find enough to get through all of the followup treatments, even if that means I have to go to Hopkins every day. It's just going to happen. All of you are helping me through it.

Thank you.

Posted by Andy at February 17, 2006 06:57 PM to the News category

Glad you made it through the ordeal. Outrageous you had to wait so long. I don't understand your medical report any better than you do. Bummer your health care provider was not more communicative.

Hope you can get some rest for a few days at least. Take care of yourself, nephew.

Good night!

Posted by: Tom at February 20, 2006 01:16 AM

I'm happy to hear the healing process is progressing as planned. As to your waiting, I as well have never understood the time interval between a Dr. Appt. and when one actually is called to be seen. On the surface, this doesn't appear too difficult of a challenge to resolve. That said, health care is a complex field and I'm sure that the gifted minds we're entrusting our unique problems to are doing what the can to appease the majority.

Posted by: Jim & Susanne at February 20, 2006 08:11 AM

Jim, I think you have highlighted my point for me, though with a slightly different intention. My problem is that they're doing what they can to appease the majority, and they're not so much as attempting to factor in the chronically fatigued minority because we don't have an outstanding physical flaw that proves our case for us. Naturally, hospitals and docs have to focus on the majority on a macro level, but every hospital and doctor's office has an elevator if it has more than one floor to account for the wheelchair-bound minority, right? Maybe the solution for CFS sufferers is to have a secretary call the house a predetermined amount of time before I should be taken back to the office, thus allowing me to get there on time but without having to wait more than a few minutes. That doesn't require time or money, just a little consideration and foresight.

Posted by: Andy at February 20, 2006 12:24 PM

You bring up a good point. Unfortunately, the medical profession is most likely years away from your novel concept. In the meantime, perhaps it's wise to take matters into your own hands in order to best acccomodate your needs.

Posted by: Jim & Susanne at February 22, 2006 09:56 PM
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