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Showing posts from 2014

Day Forty!

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**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 t…

9 to Go

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**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…

Infected. Again.

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**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 infection…

Beyond the Halfway Point AND All Clear.

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

Tuesday was treatment day #20, and as of yesterday's #21, I was officially the back side of this treatment thing.  I arrived early today for #22 - on purpose so I could sit on the bench outside Lutheran Hospital and enjoy my coffee in the crisp morning. It is gorgeous out today.

Or maybe I'm just in a particularly good mood.  
Nothing much to report on the treatment front.  Some days I feel better than I have in months, other days I feel just as terrible as I did when this all began.  It is difficult to tell...  And Ryan pointed out the other night when a friend asked how it's going that I am incredibly hesitant to admit that I might be feeling better.  Which is true.  I'm not sure exactly why that is, but I am working on figuring out that particular reaction to inquiries about my progress.  After today's session, I had to see the doctor there to assess my progress.  Unfortunately, w…

Hyperbaric Oxygen Treatments 18 & 19 (Plus the Weekend Between)

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

Last Friday:

Treatment Day: 18

Honestly?  There's really nothing to report.  Which probably played a part in my forgetting to post about it before now.  The treatments have become routine.  They feel like just a normal part of a normal day anymore.  Which means I may get a little less vigilant about posting about Every.  Single.  Day.  (Unless there are things to talk about, which, then, by all means, I will be here.)

But Friday was uneventful.  I don't even remember what was on HGTV at this point.

What I do remember is that I took a wee detour on my way to work.  It had been way too long since I paid a visit to Lake Erie.  So I decided to just go sit out on the pier at Edgewater for a moment to enjoy the beauty of the day and feel the healing power of the water.


While I was going through my cancer treatments, Ryan and I tried to go for a walk every day by the lake.  It made me feel better someh…

No Pants Goodbye Number Two & Hyperbaric Oxygen Treatment - Day Seventeen

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

Well, I survived yesterday's goodbye and managed not to cry all over Dr. Kebria like I did on Dr. Avellone...  As Ryan and I were walking down the hall on our way in, I heard my nurse, Alex, say in a sad voice, "Phoeeeebeeee..." to which I yelled back, "Don't even look at me!"  I knew if I saw Alex's sad face, too, I'd cry.  It was a MIRACLE that I held it together when my Nurse Practitioner, Erin, came out to the waiting room to hug me - I am ALWAYS crying to Erin on the phone every time something new is wrong with me.  I love my nurses as much as I love my doctors.  They are incredible ladies.

After they got my vitals, we were led to "The Room".  It was serendipitous, somehow.  The first time I ever saw Dr. Kebria was in that room, back in November of 2011.  It's the room where we met, where he did my biopsy, where Dr. Avellone told me Dr. Kebria was l…

Devastation Eve

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

Tomorrow morning, I have my every-four-months Gynecology Oncology follow-up.  It's always a day that brings with it nerves and stress.  (Will everything be ok?  Am I still cancer-free?  Will I remember to ask all of the questions I have this time around?)  But this time, I feel overwhelmed in a different way.  With sadness.

It is my Oncologist, Dr. Kebria's, last day at the Cleveland Clinic.

I know I'm not the first person in the history of Oncology to have their doctor leave.  But it doesn't matter.  My heart is broken in the same way that a heart breaks when a first love ends.

It is so hard to even imagine saying goodbye to this man tomorrow.  He literally... LITERALLY... saved my life.  How do you thank someone for that and just say goodbye, knowing you'll probably never talk to him again?

Dr. Kebria was the one who finally confirmed the fears I'd had for nearly a year.  When …

Hyperbaric Oxygen Treatment - Day Sixteen

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

Treatment Day: 16

Today's treatment was uneventful.  Nothing particularly exciting nor aggravating.

I learned that "Elbow Room" on HGTV involves a contractor making really overdone and impractical renovations to people's homes to give them more space.  Things that seem cool, but are really just going to be impossible disasters when they break.  I was not impressed.  Although one episode did make me want a treehouse.

When I was finished, I had a nice chat with some of the staff about how I'm feeling and no one really seems to know if there will be a definitive type of "knowing" for me with this.  Just that this general sense of feeling somewhat less terrible might be leading to continued less and less terrible until it's no longer terrible at all.  Time is all that will tell.

So I'm staying patient.  The patient patient.

Meanwhile, my bathroom trips have been consi…

Hyperbaric Oxygen Treatment - Day Fifteen

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

Treatment Day: 15

They had pre-warned me that the regular Monday/Tuesday doctor was on vacation, and that the doctor filling in was the one who doesn't bother to show up til 9.

I arrived at 8:45.  No sign of him.  They told me to hang out in the waiting room and finish my coffee and to head back around 8:55.  At 9:00am, the nurse paged the doctor to see where he was.  At 9:05, he called to say he'd be there in 15 minutes.  25 minutes later, he showed up.

I get my Explanation of Benefits (EOBs) emailed to me from my insurance company as they become available.  So far, I have not yet received anything for the actual oxygen chamber treatments, but I've gotten several for the doctors' fees for just BEING THERE.  Mind you, I have not ONCE seen or been seen by any of these guys.  And yet they are billing my insurance company between $150 and $400 a DAY just to show up late and sit in the hallw…

Reiki, Truth, and a Lifetime

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

The Hyperbaric Oxygen Chamber is not the only place I have been getting my healing lately.  Actually, several months ago, I began getting reiki every week or two.

For those of you who may not be familiar, reiki is essentially a sort of spiritual healing touch kind of a thing that originated in Japan less than a hundred years ago.  (You can click the link, there, if you want a more detailed description than that.)

When I was at the lowest point of dealing with my radiation disease situation, I ran into a friend who is a Reiki Master.  She felt compelled to offer me these healing sessions as an additional way to help me cope with what I had been going through.  I'd had some previous experiences with reiki through The Gathering Place (the local center here that offers free support groups, workshops, massage and reiki, etc for people touched by cancer).  Some were fantastic.  Some were ho-hum.  (I do be…

Hyperbaric Oxygen Treatment - Day Fourteen

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

Treatment Day: 14

Fridays, as I mentioned before, the doctor who is already scheduled to come in an hour later than the Monday/Tuesday/Thursday doctor, is often even LATER than expected.  Today was no exception, leaving me in the waiting room to be tortured by a FUCKING GODAWFUL band called something like "Florida-Georgia Border" on whatever shitty Morning Show was on the TV, because I still insist on showing up early just in case the doc is early so I can get out of there early and in to work as early as possible to maximize my already severely diminished hours.  I think I have finally learned my lesson.

While I waited, I pulled out a book I have been slowly reading in my (very limited) spare time.  It's called "How To Be Sick: A Buddhist-Inspired Guide for the Chronically Ill and Their Caregivers" by Toni Bernhard.  I actually found this book after fumbling upon her second book…

Hyperbaric Oxygen Treatment - Day Thirteen

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

Treatment Day: 13

The nurse told me my outfit was "so cute" today when I walked in.  I felt good and then she adds, "I guess I just like seeing actual clothes" and motions to her scrubs.  Compliment deflated.


There was no one else in the room today.  I haven't seen Bladder Guy all week - I wonder if he's finished.  He wasn't there my first week either, though, so I don't know.  Spanish Guy was also notably absent today.  He's a diabetic.  I wonder if his sugar was too low or something.  I've started to worry about him on the days he is not there.

While waiting for the doctor to arrive, I chatted with the regular nurse for a while.  She asked me if I can tell that the treatments are working.  I tried to explain that I couldn't really tell because I was in such an odd place when it began.  My pain was less constant already, after the last surgical procedure,…

Hyperbaric Oxygen Treatment - Day Twelve

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

Treatment Day: 12

So, it's twelve days in, and I have grown bored with the "format" I have been using to describe these treatments.  What I've realized, at least at this point in the game, is that there is very little about the treatments that is exciting - except, of course, for the potential cumulative benefit of them.

This does not mean that I will stop my completely awesome critiques of things occurring on HGTV when necessary - don't worry.  It just means that I feel like I need to figure out a different way to keep talking about this.

So, what can I say?  I'm twelve days down, and I really do not know if I can say that I feel any different... or any BETTER... yet.  The occasional pains are interesting, but I can't really even say if they are any different than those prior to the treatments beginning.

I have come to the conclusion that the cold symptoms are caused by th…

Hyperbaric Oxygen Treatment - Day Eleven

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

Treatment Day: 11

Arrival Time at Lutheran Hospital Wound Healing Center: 7:41am

Appointment Time: 8:00am

Treatment Started: About 8:05am

Notable things about self today: I HAD been feeling better.  The cold symptoms were on their last legs.  You know.  Those final rattle-y mucus-y coughs.  The sinuses starting to dry up.  That feeling of "Oh, thank god this shit is almost over."

Treatment Length: 2.5 hours

Physical things noted during treatment:  NONE.  Why?  Because for the first time during this whole escapade, I managed to fall asleep.  My nurse had to yell my name into the phone to wake me for BOTH of my air breaks.  I guess 14 hours in the car over two days will tire you out!

Other reasons I may have managed to sleep:  The TV was set to whatever channel Good Morning America is on, because the staff was all glued to the Robin Williams coverage.  That was all a little too hard for me to wa…

The Birthday / Funeral Weekend

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

I decided I'm going to make the weekend a separate post rather than rolling the weekend highlights into today's treatment post.  It'll be easier that way...

So.  Friday evening, my dear old friend, Dawn, from my Colorado days, arrived for a visit.  She was amazing enough to offer to stay through Tuesday morning so that she could house/dog-sit for us while we were in New Jersey Sunday to Monday.  Only a true friend would come for a visit from thousands of miles away and hang out while you leave - just to help you out.  Dawn is pretty spectacular.  I'm glad we at least got to hang out on Friday night and all day Saturday.

Sunday morning (Ryan's birthday) we threw a bag in the car and headed east.  My beautiful cousin, Marna, passed away last week and Ryan understood my feeling the need to attend the service.  As a child, Marna and her sister, Karla, were the first people I really remem…

Hyperbaric Oxygen Treatment - Day Ten

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

Treatment Day:  10
Arrival Time at Lutheran Hospital Wound Healing Center:  8:45am
Appointment Time:  9:00 - 9:30am (The regular Friday doctor is a bit of a wild card, apparently.)
Stuff chatted about with nurse while waiting:  The fact that most people in for the actual Chamber treatments are either radiation injury peeps or diabetics who don't take care of themselves and end up with wicked wounds on their feet and legs.  The diabetics often don't even end up getting the treatments because they take such poor care of themselves, their blood sugar is too off to dive.  Or they refuse to quit smoking, so the treatmentsend up being useless, because the effects of smoking counteract what the treatments do to help.  I can't understand this.  WHY would you do this to yourself.  She said they often end up losing a toe, a few toes, a foot, eventually a limb because to them - losing a toe is easier than …

Hyperbaric Oxygen Treatment - Day Nine

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

Treatment Day:  9
Arrival Time at Lutheran Hospital Wound Healing Center:  7:50am
Appointment Time:  8:00am 
Treatment actually started: About 8:05am 
Notable things about self today:  Bladder pain continues to be less than awesome.  Cold still holding on as well.  Temp before the "dive" was 98.9.  Nurse said "Don't get sick!"  Dude... I've BEEN sick this whole time.  Where have you been?
Miscellaneous:  Today I got a normal gown... but enormous pants.
Treatment length:  2.5 hours

Physical things noted during treatment:  Pain in bladder more noticeable.  Hoping this is part of healing and not new issues developing.  

Things happening on HGTV today:  Marathon of "Rescue my Renovation".  Which is basically a low-rent knock-off of the show "Holmes on Homes" which we used to watch when we had TV (because Ryan had a weird man-crush on Holmes).  A contractor comes in and…

Hyperbaric Oxygen Treatment - Day Eight

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

Treatment Day:  8

Arrival Time at Lutheran Hospital Wound Healing Center:  7:55am
Appointment Time:  8:30am 
Treatment actually started: About 8:05am (Doctor was early!)
Notable things about self today:  Sinuses seem SLIGHTLY less effed up.  Might actually be kicking this whatever-it-is.  Finally.  
Miscellaneous:  I got the janky gown with the town sleeves for the second time today.  I have to assume they were cut to accommodate the massive arms of one of the dreadfully obese people I often see in the waiting room.  Still.  I feel like they should save that shitty shit for those people again.  I have regular arms.

Treatment length:  2.5 hours

Physical things noted during treatment:  Definite noticeable twinges of pain in the bladder area.  (These continued throughout the day.  Still happening now.)

Things happening on HGTV today:  Marathon of "Buying and Selling (with the Property Brothers)".  This is…

Hyperbaric Oxygen Treatment - Day Seven

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

Treatment Day:  7

Arrival Time at Lutheran Hospital Wound Healing Center:  7:47am
Number of old friends I haven't seen in years that I ran into as I was coming in and she was getting off work: 1. Sarah Morgan. Awesome girl.

Appointment Time:  8:00am 
Things I learned while waiting for the doctor to arrive:  The nurse helping today has three dogs.  
Distressing/upsetting things overheard while waiting for the doctor to arrive:  Other nurse talking to bladder guy about whether they will have to do the surgery where they build him a new bladder... he said he was hopeful that the treatments were going to prevent that from happening.  I hope so, too.  I want GOOD NEWS ONLY about this stuff.

Doctor arrived:  8:30am
Reason Doctor was late:  She thought the first "dive" wasn't until 8:30.  
Other things I learned today:  They refer to our time in the tanks as "dives".  Because the pressure is…