And, BINGO!
Well, I had my appointment today with Dr. Avellone - my new Urologist. (I feel like I have more "ologists" than the average 38 year old woman, that's for sure...) Liked him immediately. We went over my various symptoms and, much as we suspected, he agreed that they sounded like indicators of radiation cystitis - particularly the pain I have been experiencing AFTER I empty my bladder. The pain that makes my frequent restroom visits 5 times longer than the act itself just trying to cope with the pain after the fact. He explained that the as the bladder empties and the parts of the lining that have been damaged come back into contact with each other as everything sort of deflates - it can be painful. Makes sense.
So, on to the cystoscopy. If you're not familiar, this is a procedure in which a tube that has a camera on the end of it is inserted in the urethra, and the bladder is then filled with saline so the doc can look around in there and see what's up. I got a single dose antibiotic to prevent them giving me a UTI and then I got slathered down there with some lidocaine jelly. Which was gross, but made someone jamming several inches of not-the-thinnest cabling up your pee-hole a little less terrible. We were disappointed to learn that the scope he was using was not the one that hooks up to the monitor - so Ryan and I did not get to watch the Bladder Show. Bummed.
Immediately, he said that, yes, what I am experiencing is almost definitely radiation cystitis. But, unlike the standard manifestations of such, where it not only comes on much later, it is concentrated in just one spot, rather than even striations throughout the entire bladder. And the spot it is concentrated in? Directly next to my cervix. Ta-da!
Next came the part I was NOT expecting. He wants to schedule a biopsy. Which is done under anesthesia. In the hospital. Possibly with an overnight stay. Blerghhh. His scheduler is supposed to call me in the next couple days, so I'm not even sure, yet, how long I have to wait for this to happen.
He did repeatedly say that he did not believe it could be recurrent cervical cancer in the bladder, but that the biopsy/ies would rule this out for certain and that is OBVIOUSLY important. Assuming that this is the case, and it is merely the cystitis, he said he would then cauterize the affected area and this should stop the pain. I was unclear, but Ryan said it sounded like this cauterization would be a second procedure, as he would not want to do it until he was obviously certain that it is not metastatic cancer.
So basically, we PROBABLY have an answer, but it comes with intermediate and continued waiting and wondering, which will probably bring with it more nervousness for me and Ryan and everyone else following along. It's hard to accept that these types of worries - they are just part of my life now. And while I am NOT particularly worried at the moment - not at all, really - I know as the surgery approaches and the subsequent wait for results drags on, the nerves will come. They always do. I hate it, but it is my life now. It just is. I cannot change this. It will never go away. I will always be a cancer survivor and therefore the rest of my life will be about continuing to survive cancer.
I am lucky and blessed to be well supported from every direction I can even think to look. I have the constant benefits (for the most part at least) of being able to really keep the PMA going. And when it waivers, I have so many beautiful friends and family members there keeping it up for me. I know without a doubt that no matter what happens, no matter what the results in the upcoming weeks (or any future results in the years to come) might be - that I will prevail. That no matter what, despite the difficulties, despite the worries, despite the pain, despite the occasional uncertainty... no matter what, I will always make it through and I will always be OK. I got this.
Xxo, Phoebe
So, on to the cystoscopy. If you're not familiar, this is a procedure in which a tube that has a camera on the end of it is inserted in the urethra, and the bladder is then filled with saline so the doc can look around in there and see what's up. I got a single dose antibiotic to prevent them giving me a UTI and then I got slathered down there with some lidocaine jelly. Which was gross, but made someone jamming several inches of not-the-thinnest cabling up your pee-hole a little less terrible. We were disappointed to learn that the scope he was using was not the one that hooks up to the monitor - so Ryan and I did not get to watch the Bladder Show. Bummed.
Immediately, he said that, yes, what I am experiencing is almost definitely radiation cystitis. But, unlike the standard manifestations of such, where it not only comes on much later, it is concentrated in just one spot, rather than even striations throughout the entire bladder. And the spot it is concentrated in? Directly next to my cervix. Ta-da!
Next came the part I was NOT expecting. He wants to schedule a biopsy. Which is done under anesthesia. In the hospital. Possibly with an overnight stay. Blerghhh. His scheduler is supposed to call me in the next couple days, so I'm not even sure, yet, how long I have to wait for this to happen.
He did repeatedly say that he did not believe it could be recurrent cervical cancer in the bladder, but that the biopsy/ies would rule this out for certain and that is OBVIOUSLY important. Assuming that this is the case, and it is merely the cystitis, he said he would then cauterize the affected area and this should stop the pain. I was unclear, but Ryan said it sounded like this cauterization would be a second procedure, as he would not want to do it until he was obviously certain that it is not metastatic cancer.
So basically, we PROBABLY have an answer, but it comes with intermediate and continued waiting and wondering, which will probably bring with it more nervousness for me and Ryan and everyone else following along. It's hard to accept that these types of worries - they are just part of my life now. And while I am NOT particularly worried at the moment - not at all, really - I know as the surgery approaches and the subsequent wait for results drags on, the nerves will come. They always do. I hate it, but it is my life now. It just is. I cannot change this. It will never go away. I will always be a cancer survivor and therefore the rest of my life will be about continuing to survive cancer.
I am lucky and blessed to be well supported from every direction I can even think to look. I have the constant benefits (for the most part at least) of being able to really keep the PMA going. And when it waivers, I have so many beautiful friends and family members there keeping it up for me. I know without a doubt that no matter what happens, no matter what the results in the upcoming weeks (or any future results in the years to come) might be - that I will prevail. That no matter what, despite the difficulties, despite the worries, despite the pain, despite the occasional uncertainty... no matter what, I will always make it through and I will always be OK. I got this.
Xxo, Phoebe
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