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Well, it's still all surreal....walking into the Oncology center yet again for another checkup. Catching a whiff of the place, particularly the infusion room, still invokes flashbacks...makes me want to puke for a second. Sitting in the waiting room after they took my blood pressure and being told that my Onco. will be in in a few minutes....heart beating like crazy, you feel like you beat it, except for that tiny corner in the back of your mind that still screams...."Hold On, what if ?". Then the doc comes in. My immediate question is: "Is everything good ?". The answer is Yes. So how are things going ? Any question/concerns. Yes doc. and I whip out my big question: What's my surveillance looking like, particularly with regards to CTs ? we look at the NCCN guidelines and discuss it and both of our opinions. We come to agreement to do a final scan in July which will be my 3 years checkup. Next thing I dive into are my tumor markers, why was my AFP trending up this past year ?. then onto the metabolics....which always have something off every time....usually my Proteins,Calcium, Globulins and some other random metric that was normal in all other tests but this one. Somehow I ask a question about a 2mm node found in my lower lung back in July on my CT. Why was it never mentioned before ? Why was it not in past radiology reports ? We look at the scan. May have been a minor infection, collapsed air sacs in the lung, etc. nothing to worry about. Wasit from the Bleo...we'll never know. If any random joe was pulled off of the street and took a CT...they'd probably find something. But for us, we always question every little finding. Next we discuss other advances in the Oncology world. I learn something new and exciting every time....like how most patients do not respond to immunotherapy in general, but those that do, do so well. But alas even with that treatment modality there is no free lunch....they worry about the immune system then attacking normal cells. We discussed my current risks for recurrence (<1%) and that the NCCN guidelines are relaxing more on sureveillance. It's really just these 1st 1-3 years post chemo that are the highest risk years. I ask if she's had any patients who have relapsed. She had one who failed 3xBEP, then failed 4xTIP and then went to MD Anderson for High Dose....he's now 5 years out and doing very well. I can't even begin to imagine that hell. Some how the conversation turns to my previous appt with Dr. Einhorn and the Platinum study that I was in. I mentioned how miserably I failed the hearing test. She knows that she tried to avoid platinum damage to my kidneys and hearing. My Kidneys are just fine....why the bad hearing loss? I had to remind her of how I was born with a hearing loss in the high frequencies...we knew BEP would make it worse. Last but not least: time for the physical. Out comes the stethoscope, breath in/out, palpates my nodes, checks for swelling in my lower legs, looks in my eyes and ears and opens my mouth with that small spot light.... and at last the order to Drop my Pants. All right, another appt in the books with her favorite kind of patient....the curable kind. Next go see scheduling and set up my final CT scan for July and my blood work and appointment.
Half my questions today came up as a direct result of threads on this site that I have been involved in in the last week or so.
Yep. That's the life of an TC Oncology patient.
I am better for it !
Plus; I get to have some really cool t-shirts about how "I kicked TC in the ball", etc.
Sorry for the long thread....I just sat down and started typing whatever came out.
- Matt
Half my questions today came up as a direct result of threads on this site that I have been involved in in the last week or so.
Yep. That's the life of an TC Oncology patient.
I am better for it !
Plus; I get to have some really cool t-shirts about how "I kicked TC in the ball", etc.
Sorry for the long thread....I just sat down and started typing whatever came out.
- Matt
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