Positively Phoebe

A month or so ago, I saw that Billy Bragg, one of my favorite musicians, was going to be playing near Cleveland. Knowing I couldn't actually afford to go, I jokingly posted about the show on Facebook, saying that if anyone wanted to get a late birthday gift for Ryan and I... Who would have expected that someone would actually jump on that?!  Well, our good friend, Dan, did just that.  (Thanks, Dan!!!)   Dan is one of the good ones.  Literally and figuratively.  Friends that are so special to us, we basically adopt them as family.  I am extremely lucky.  I have an abundance of friends I can truly say are family to me.  People I know have my back no matter what, and whose backs I've got as well.  And there are so many things happening in my life right now that make the importance of this so much clearer.  But the obvious one is, of course... ...tomorrow's biopsy surgery.   I think a lot of people missed this little wrinkle in my post-...

On Sunday, October 13th, I will be waking up on the final day of the second annual Gathering Place Young Adults Cancer Retreat.  And at 5pm that evening, I will be heading to Wade Oval to walk in the Leukemia & Lymphoma Society's Light the Night Walk to walk with Team Spencer!!! I am walking in honor of Spencer and his amazing positivity.  And in honor of his family and their inspiring resilience. I am walking in honor of all the awesome Leukemia & Lymphoma survivors I have met in my life (including some from last year's Young Adults Cancer Retreat!). I am walking in honor of ALL the cancer survivors in my life.  And in honor of a very special anonymous friend's loved one who is just beginning their own battle. I set myself a pretty high fundraising goal just because you can never really do enough... If you can donate at all - even a few bucks - please do: http://pages.lightthenight.org/noh/Clevelnd13/PNelson Thank you. Love love, Phoebe

It's hard for me to admit things like that, but I the truth is, it's been really difficult, albeit sort of off-and-on, to keep up the "positive" part of "Positively Phoebe".  I'm struggling today more than I have in a while.  I can't really even explain why.  I just feel lost.  Overwhelmed.  Sad. When I didn't hear from Dr. Avallone's scheduling person for the bladder biopsy procedure by Friday, I spent an hour on hold trying to call HER.  I didn't want to wait out the weekend without having that shit on the books.  But then when I finally did talk to her (and got the "surgery" scheduled for Monday, September 30th) she told me that I'd have to have some pre-procedure testing done and that I could expect to hear from that office next week.  So I'm basically still waiting to find out just how much work I'll have to miss, and that is stressing me out.  Ryan and I keep saying we are going to really work on NOT stressin...

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 wh...

Once again, I have not had the opportunity to update since my last visit to Dr. Kebria's office.  My apologies.  (It sure was a lot easier to update regularly when I was in bed most of the day and no one expected anything of me.  Ha.) So, with the CAT Scan coming back clear and the urine cultures showing nothing abnormal but blood, Ryan's assumption of Radiation Cystitis seems to be the likely culprit.  Basically it is an irritation of the bladder caused by radiation.  (People keep asking if there are cysts in my bladder, but no - "cyst" is just the medical prefix that means "bladder".)  I have a cystoscopy scheduled with a Urologist at my Oncology office on September 11, and that will tell us a lot more about how much damage there is to my bladder and how to move forward with treatment / symptom management measures.  (One of which could be Hyperbaric Oxygen Chamber Treatment - NEAT!!!!) It's funny.  During radiation, I remember my nurse, Jenn...