Sunday, October 30, 2016

If you get email updates or anything, I'm sorry!

Big apologies to any of my old followers who were following this blog via email updates or whatever. I decided that I was never going to return to my "The Long Ease" blog, and rather than continuing to pay for two domains, I just transferred all of those posts over here. Didn't occur to me til I finished that I lost all of the original comments I received during my HBOT... oops!

Regardless, I'm back to not posting on just ONE blog again. Which I'm sure will make not reading everything I don't post on both sites a lot less time consuming for everyone.

Honestly, though, I've actually been thinking a lot about this blog the past week. Partly because I am trying to just be more positive in general, but probably moreso because we are coming up on my 5 YEAR diagnosis anniversary. My Cancerversary. The magical 5 year mark where they'll let you start thinking about things like being eligible for life insurance again and whatnot.

I haven't really planned any sort of big celebration like I did on year one (during Hurricane Sandy with the house lit up thanks to Ryan's trusty generator!), but who knows...

If you ARE still reading this for some reason, in addition to being sorry for flooding you with the reposts of all of the bladder blogs, I thank you for sticking with me despite my years of silence. I love you.

Thursday, September 25, 2014

Day Forty!

**This post was transferred from the now defunct "The Long Ease" blog.**

Two days ago, I said something to the nurse at HBOT about being almost done and she mentioned the fact that my insurance had approved 30 more sessions after the initial 30.  It sent me into complete freak-out mode - I'm not going to lie.  I think I had been getting through all of this stuff knowing that there was this countdown.  This end date.  I felt completely blindsided by her news.  Did I HAVE to keep going?  What would they say at work?  Can I afford to keep getting these tiny paychecks?  SHOULD I keep going?  Would more be better, even though I am already feeling so much better?

I had a million questions.  And the problem was that NO ONE can answer them.  The doctors at the Wound Center seem to know basically NOTHING about my condition.  The questions they've asked me in the follow-up sessions I have with them every week or two are useless.  And then the Urologist didn't really seem to know much about the HBOT - it took us most of a year to get him to agree to send me.  And now he's gone and I don't have a new doctor, and somehow finding one, figuring out an appointment wherein I do what?  Explain  my entire history to someone else and expect them to be able to just have an answer?  Doesn't seem likely or realistic.  I'm also afraid, based on the locale of the damage in my bladder, to just have another cystoscopy (the procedure where the look inside the bladder with a tiny camera) because I fear further damage of the healing area...

The news was just terrible, to be honest.  I was so unsure.  So overwhelmed.  I felt completely alone with my rare condition that I got in a rare time-frame in a rare spot and in a rare way.  I searched the internet for ANY first-hand accounts or blogs from someone who had been through these treatments for this issue.  And after digging through what little info I can find, most of which is all extremely outdated and overly technical medical writing, I was able to find ONE person on the entire internet writing about their experience with this.  Me.  My own damn blog.  That's it.  Completely alone.

After some time and some serious thinking about what continuing right now would mean, I chose to be done with it at the initial forty.  

Here's why.  I feel better.  A lot better.  Urgency is basically non-existent.  Pain... maybe three times in the last few weeks has there been any at all.  I have to trust myself.  Not only because there is no one else to ask, but because coming to trust my body and how I feel is such a huge part of the post-cancer life I now live.  And I feel like the stress of trying to continue becomes more stressful than additional treatments would be beneficial.  

And I could be wrong.  And maybe, if I am, I will go back and do more again in the future.  The nurses said it happens and that I'd always be welcome to return if needed.

So, that being the case... today is the last day.  The last one.  My last morning of forced HGTV viewing.

It will be so strange to go back to regular mornings tomorrow...

Wish me luck!

Xxo, Phoebe Marie

Sunday, September 14, 2014

9 to Go

**This post was transferred from the now defunct "The Long Ease" blog.**

It's been a hectic few weeks, and I sort of lost track of my blogging.  But I wanted to pop in real quick this evening with a TMI report about my healing.

I've been told from the get-go that these oxygen treatments have the best results with radiation injury.  As you likely know, I started the treatments for an injury inside my bladder - therefore the healing progress cannot be gauged visually without an expensive (and in my case, somewhat risky) procedure (cystoscopy). The only way to tell if it's working is really just based on how I feel.  I've been hesitant, to say the least, to admit or even believe that I am doing better, but over the past couple weeks, it's really gotten quite obvious:

I no longer wake in the night to go to the bathroom, and when I DO have to pee, there is no pain, pressure or discomfort AT ALL.  I no longer wince in pain when my car hits a bump let alone when I have to drive over the brick road at the end of my street.  The random occasional stabbing pains are down to maybe a couple a week instead of a couple an hour.  And when I got the test results from the last doctor visit, there were NO red blood cells in my urine.

This is all incredibly good news and very promising.  But it is NOT what I sat down tonight to write about.

I mentioned that the HBOT is believed to work the best on radiation injuries.  When I began the treatments, a friend told me about someone at her job who had breast radiation and the HBOT really helped with her radiation burns from that.  Well, my bladder is not the only thing that was damaged by the radiation.  I also had terrible burns from my treatments.  If you were reading my previous blog back DURING my cancer treatments nearly three years ago, you may remember the difficulty I had with how the radiation affected, uhhh, my butt-crack.  In addition to torching all of the hair out of that whole area, my radiation treatments left me with painful burned areas that have never quite been the same.  It's made riding a bike next to impossible and often left me fussing to try to keep my cheeks from touching just so the discomfort would stop enough for me to fall asleep.

But this morning, while I was in the shower, I noticed something that I had not realized previously - that pain from those burns... it's gone.  Completely gone.  The skin no longer felt raw - it just felt like the areas I have up front where I had radiation burns that DID heal after treatment ended.  I couldn't believe that I had not noticed it earlier!!

I know it's a strange little added victory, but I cannot begin to explain what a difference I KNOW this additional bit of healing is going to make to my quality of life.

I am completely thrilled.

In the morning, I head back in for my second to last week at the Wound Center.  I will definitely be heading into the tube with some added gratitude tomorrow.

Love love,
Phoebe Marie

(From an unrelated trip to the Botanical Gardens this weekend.)

Tuesday, September 2, 2014

Infected. Again.

**This post was transferred from the now defunct "The Long Ease" blog.**

Well, today SHOULD HAVE been Treatment Day #24... but things don't always go according to plan...

Yesterday, as I sat across from Ryan during our Labor Day breakfast at our corner diner, I was feeling pretty great.  Like, finally feeling like I knew for sure that I was getting better.  No doubt in my mind.  I even felt comfortable saying it out loud.  That was an awesome feeling.

After breakfast, we went to run some errands, and I started to feel a little "bleh" in the belly.  Bloated and uncomfortable by the time we got home, I was in and out of the bathroom for a couple hours.  Ryan guessed that I probably got a mushroom in my omelette somehow.  Not hard to believe and the symptoms seemed similar to the mushroom situation.  But as the day went on, I started to feel like it was less gastric upset, and more the same stupid lower abdominal pain that has accompanied my last several infections - the first of which had me in the ER, I was in so much pain and the second of which had a doctor FORCING me to go to the ER, even though at that point I was pretty sure I knew what was happening.

This time, it was even more obvious.  I took my temperature and had a fever.  Any motion made my whole belly hurt.  It was obviously YET ANOTHER urinary tract infection.

Last time, one of the 62 doctors I talked to said that it is not uncommon for some women to get a UTI every time they have sex.  And guess what.  Both ER trips and my current bout of discomfort happened within 48 hours of... just that.

(It's funny - as much as I can talk about all of the fucked up things happening to my body, I still feel strange talking about my sex life with my husband here.  All of my issues have made what should be a very normal part of a healthy relationship become a far more complicated situation than it would be for most.  And for whatever reason, it feels disrespectful to the man who so graciously deals with the awkwardness of my post-cancer anatomy, to publicly yap about our sexy-times.)

So anyhow.  I was sent home from HBOT today.  A fever is a no-no, I guess.  So, I came home, waited for my family doc's office to open, and made myself an appointment there.  I explained my history to yet another one of the many doc's there.  He wrote me up a script for Amoxicillin and put a refill on it in case this happens again.  Which he said he'd guess it probably will.  They may end up having to put me on a prophylactic antibiotic - something to keep this from happening every time we have sex.  Yay.  More pills.

There is so much about this whole "Life After Cancer" thing that makes every single day a challenge.  I am frustrated, exhausted, and desperate for SOMETHING to go right.  I still have a lot of hope about the HBOT- I just need to make it through the rest of the treatments, find a new Urologist, and see if they want to do another cystoscopy to look and see if it has really helped.

For now, I'm going back to bed to try to help the healing along.  More work missed.  Ugh.

Xxo, Phoebe Marie