Post Follow-Up Follow-Up
**This post was transferred from the now defunct "The Long Ease" blog.**
My appointment with Dr. Avallone (Urology Oncologist) today was fucking stellar.
Not so much in that I am doing well, because honestly - I'm not. But because he's so completely awesome and so committed to figuring out how to help me.
Here's the highlights:
My surgery last month removed "stones and necrotic debris" left from the previous surgery/biopsy I had on my bladder last fall. Basically, it never healed. The radiation damage is too concentrated and too severe.
The reason I was in such GOD-AWFUL pain and was bleeding so much from the catheter I was left with for 5 days following the surgery is that the balloon that hold the catheter in place was basically right ON the worst part of the radiation damaged area of my bladder. Ouch. No wonder it took me 10 minutes to walk from the parking lot to my desk the two days I attempted to go to work with it. Sheesh!
I am back on the Ditropan, which should decrease the feeling of needing to pee approximately every 20-120 minutes all day (and night) long.
He does not believe I will heal after this procedure either. I am scheduled for another cystoscopy (look into the bladder with a tiny camera) in 6 weeks. Assuming what he believes is true, I will be referred for Hyperbaric Oxygen Therapy (HBOT). (I'll talk more about that later.) This procedure requires pre-approval from my insurance company. He is ready for the fight! (And I am preparing mentally & financially for 6 weeks of missing 3 hours a day of work - UGH!)
My diagnosis of Radiation Cystitis is basically the same thing as Pelvic Radiation Disease, which can also include Radiation Colitis/Radiation Proctitis. I assume you all know what that means.
Because my CT scan showed similar thickening/scarring in my sigmoid colon to that in my bladder, I am to make another appointment with my Colorectal Surgeon to have him look over the CT scan and (likely) recommend a colonoscopy. Since I have MINOR bowel issues already, this is best addressed now. Especially if I can end up with two doctors pushing for the HBOT. My biggest fear in the world is colostomy/ileostomy. So if we can nip this shit (accidental pun) in the bud NOW... I will be a very happy girl.
He is going to have his wife send me some information about Interstitial Cystitis Diets. Radiation Cystitis is a different thing but has similar symptoms and he thinks that perhaps if I try some of the dietary changes I can help to bring myself some relief. Seriously, though? How cool is that? Did you catch that shit? My doctor is having his WIFE send me some nutrition info. He's amazing.
And basically, I think that's it. Ryan and I are going to do some research on the two HBOT joints at Cleveland Clinic over the next 6 weeks, to see which type we think is the right way to go (there is one that you lay in like an iron lung and one that is like a room you can walk into and hang out). And then we wait and see.
It was a good day, despite basically being told that, yes, this may never heal.
Oh - I also stopped down in the basement to visit a certain nurse about whom I have many incredible stories of connection and hope. But that's a post for another day.
Goodnight all.
Love love,
Phoebe
My appointment with Dr. Avallone (Urology Oncologist) today was fucking stellar.
Not so much in that I am doing well, because honestly - I'm not. But because he's so completely awesome and so committed to figuring out how to help me.
Here's the highlights:
My surgery last month removed "stones and necrotic debris" left from the previous surgery/biopsy I had on my bladder last fall. Basically, it never healed. The radiation damage is too concentrated and too severe.
The reason I was in such GOD-AWFUL pain and was bleeding so much from the catheter I was left with for 5 days following the surgery is that the balloon that hold the catheter in place was basically right ON the worst part of the radiation damaged area of my bladder. Ouch. No wonder it took me 10 minutes to walk from the parking lot to my desk the two days I attempted to go to work with it. Sheesh!
I am back on the Ditropan, which should decrease the feeling of needing to pee approximately every 20-120 minutes all day (and night) long.
He does not believe I will heal after this procedure either. I am scheduled for another cystoscopy (look into the bladder with a tiny camera) in 6 weeks. Assuming what he believes is true, I will be referred for Hyperbaric Oxygen Therapy (HBOT). (I'll talk more about that later.) This procedure requires pre-approval from my insurance company. He is ready for the fight! (And I am preparing mentally & financially for 6 weeks of missing 3 hours a day of work - UGH!)
My diagnosis of Radiation Cystitis is basically the same thing as Pelvic Radiation Disease, which can also include Radiation Colitis/Radiation Proctitis. I assume you all know what that means.
Because my CT scan showed similar thickening/scarring in my sigmoid colon to that in my bladder, I am to make another appointment with my Colorectal Surgeon to have him look over the CT scan and (likely) recommend a colonoscopy. Since I have MINOR bowel issues already, this is best addressed now. Especially if I can end up with two doctors pushing for the HBOT. My biggest fear in the world is colostomy/ileostomy. So if we can nip this shit (accidental pun) in the bud NOW... I will be a very happy girl.
He is going to have his wife send me some information about Interstitial Cystitis Diets. Radiation Cystitis is a different thing but has similar symptoms and he thinks that perhaps if I try some of the dietary changes I can help to bring myself some relief. Seriously, though? How cool is that? Did you catch that shit? My doctor is having his WIFE send me some nutrition info. He's amazing.
And basically, I think that's it. Ryan and I are going to do some research on the two HBOT joints at Cleveland Clinic over the next 6 weeks, to see which type we think is the right way to go (there is one that you lay in like an iron lung and one that is like a room you can walk into and hang out). And then we wait and see.
It was a good day, despite basically being told that, yes, this may never heal.
Oh - I also stopped down in the basement to visit a certain nurse about whom I have many incredible stories of connection and hope. But that's a post for another day.
Goodnight all.
Love love,
Phoebe
Comments