Three-month follow-up (graphic, be advised)

Yesterday, I went to the hospital where I had external beam radiation for a checkup.  Everything is healing well, but I had something weird happen to me the night before the appointment...

For a few days before seeing the doctor, I had a lot of bowel movements.  Not constipation, not diarrhea.  Since I was so sore from going and wiping, I had the bright red blood common with the frequency of those activities.  No big deal.  Well, the last BM I took had little blood clots in it and dark crimson blood.  Not normal... at all.

My radiation oncologist told me I should see a gastroenterologist, just to be sure everything is okay.  My nurse practitioner concurs.  It's probably hemorrhoids or an ulcer, but they want to rule out anything "more serious". Tomorrow, I call the oncologist for a referral.
If I end up needing a colonoscopy, I need to be hooked to an IV because I can't drink enough to keep hydrated during the evacuation process.

Yet another medical issue.  Yet another doctor who might not treat me well because of my fat or disabilities.  Yes, it happens.  I'm so tired of being "medically complex"... feeling like I'm some leaky ship too far from shore.

I have a lot of stress going on.  Summer is a busy time with birthdays, meetings, the upcoming renovations, the online mentor program I'm running, updating blogs... I juggle other stuff, too.  I wouldn't be surprised if stress was (again) eating holes in me.  But, we can't be sure right now.

I'll keep you posted.

The Contractors

Our apartment was measured and examined today.  The renovations are taking place over the summer.  I haven't had time to talk to anyone about it.  They said there'd be meetings before they started anything...

They want to redo our kitchenette.  I'm fine with this.  They want to "fix" our bathroom. I'm not okay with this and said so.  The head of maintenance said four times "we'll be in touch" and wouldn't listen as I talked.  He kept saying "I know" when I talked about how I crawl around the place.  He doesn't know.  My husband told me later he felt the guy was very dismissive of my concerns... I felt the same.

They want to make our apartment more ADA compliant, but the ADA doesn't cover cripples like me in every instance.  I transfer from the floor and most things are set up for wheelchair transfers in the ADA guidelines.  They make one wrong move and we're homeless.  And we got the brush-off. 

I called my mom after they went on to the next apartment and broke down.  I sobbed and screamed that we should have let the cancer kill me.  If I weren't disabled, we could move anywhere.  That I'm so f*cking tired of fighting for every basic thing in my life most people never have to give a thought.  I looked into my husband's tearing-up eyes as he cupped my red cheeks and told him he'd be better off if I would have died.

I'm so tired of fighting.

But, I will.

Tuesday, I'm going to request a meeting with whoever had the idea to renovate and whoever is planning the renovations.  When we do meet, I will have them go through every single change and give my input.  I hope they listen.  If not, I have to go higher in their chain until someone does.  I can't lose the home we've made here for the last decade.  

My husband talks about winning the lottery so we can have our own house and not worry about a landlord "knowing it will be better for me" and changing what works.  The lottery being the only way we'd ever afford something like that because I'm a government leech.

Who knows?  The changes could be amazing.  But, I'm not holding my breath.  The carpet they are replacing our current one with hurts to crawl on (it's the same one in our building's hallway).  And the bars they wanted in my bathroom when I first moved in wouldn't have worked if they followed the ADA guidelines (they thankfully didn't).  They claim they have to do this.  So, I doubt I'll luck out this time.

Even if I do get lucky and they listen, it's still going to be months of worry and arguing and renovating.  It's going to cost mega amounts of energy I don't have to spare.  It means more days in bed asleep, the one day a week I get out of the apartment being used to check on things.  Possibly a hospitalization because stress strangles what little bit of immune system I have.  I'll be cancelling some of the few social engagements I manage.  My writing and submitting will suffer like last year and I'll feel like a failure because I'm "doing nothing with my life".

Last year was cancer treatment, the cancer that hasn't been declared gone completely by a doctor.  This year is the possibility of homelessness.  And I'll fight because the alternative is no alternative.

Maybe we'll spend money we shouldn't and buy a lotto ticket for Saturday.  At least I'll have hope for a better future than the one I'm staring into.

Good news and bad feelings

I saw Dr. Marvelous yesterday and had an MRI.  I was travelling and at appointments for ten hours.  My brain isn't working well.  My body is even worse.  Even typing sparse sentences is difficult.

The MRI shows no signs of the tumor!  Looks like I'll be able to celebrate my birthday on Sunday a little lighter of heart and a bit more certain of the future.  I'm happy.  So happy.

But, everything has been difficult.  It's been so hard that my thoughts and emotions are on a merry-go-round pushed by lions dressed as mermaid clowns in the middle of a tornado.  Maybe when I get my energy back I won't feel or think like this.

My apartment complex is going to be renovated this year-- doors, windows, counters, carpets, everything will be replaced.  They mentioned something about making it more accessible which, while good in theory, might be terrible because I'm not the common cripple the ADA guidelines work for.  Put in a carpet too rough and I can't crawl on it.  "Fix" the bathroom and I can't shower.  They do one wrong thing and my husband and I will have to move.  There will be more meetings... we'll see what they say.

Another thing bugging me:  I have more time to live my life (which is great), but what do I do with it?  I'm almost 33.  I've done nothing positive or exciting with my life for about a decade now.  There will be no children, pets, jobs, houses, travelling, college education, etc.  Between being a dirty scrounger on the dole and having chronic pain and health issues... there isn't much I can do with the time I'm given that will have a major impact.  I try, furiously.  But it feels futile.  It seems most of my energy is simply used to keep me alive.

In August, I will have another CT scan and see my team again to make sure the cancer hasn't taken up residence elsewhere.  I hope it hasn't.  If it has, we'll deal with it again until it's gone for good.

It's just been too much.  Maybe I won't feel this unrelenting ball of conflict in a few weeks.  Maybe an opportunity will come along and guide me to where I need to be.  But it stinks right now.  I just have to get through it.

Cancer verdict suspended

I currently reside in cancer purgatory.  Even though I have another follow-up appointment on the thirteenth of this month, no one will be able to tell me anything until the follow-up taking place in the middle of February when I get my next MRI.

I will find out if my cancer is gone right around my birthday.  This will either lead to an awesome birthday... or one of my most difficult.

Not knowing isn't easy.  I realize no one is guaranteed so much as their next breath... but this is different, close.  I still plan for my future, as much as anyone can with no money or career prospects, but what little I can picture for myself is on hold until I'm given the answer.  I'm suspended in midair, legs lazily moving but going nowhere.

It's agitation, pure and undiluted.  It's upset.  It's blessed time not everyone has so I feel like crap for feeling this way.  I just tell myself this is necessary time... the hitch before the next breath.  The moment the song ends before the applause begins.  What can I learn if I listen to the stillness, this pause?  And can I calm enough to hear it?

Cancer antigen test

On November 29th, I saw Dr. C. for the first follow-up appointment since treatment ended.  Before the appointment, I had blood drawn.  One of the tests was a cancer antigen test, something I'd never heard of before.  It is a test used to see if treatment is working.

A day or so after my appointment, my results came back.  I was at a 6.7 which is considered within normal range!  I was stoked.  It seemed like everything might turn out.  Then, I decided to see if I'd ever had the test done before.  I had... once in August before treatment began.  It used to be a 7.2... progress!  But, wait.  7.2 is also considered in the normal range.  So, progress, but nothing earth-shattering.

I keep telling myself any decrease is good.  I only had a few little spots, so the change wouldn't be huge... right?  I try to be positive.  But, since it wasn't definitive, it was a letdown I can't afford to linger on.

Internal radiation (hospital time)

The following post will be disjointed.  It will not be technical and detached.  It was a lot to go through.  Forgive the typos.
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On Sunday, November twelfth, my husband and I went to Dr. Marvelous' hospital (from hereafter called City Block Hospital).  It was a rocky start.

First, they had us go to the eighth floor in one wing.  As we're being checked into the room (having already been in the room for about a half-hour) we're told I'm supposed to be on the fourth floor of a totally different wing.  Once we get into that room, we realize there isn't anywhere for Mr. Davicob to sleep but an uncomfortable recliner.  The bed I generally like (a bariatric bed) had to be ordered in special and took well over an hour to be set up.  We also had a nasty shock when we found out that Mr. Davicob, being my guest, would have to pay for his own meals; we're poor and no one told us.

During my consultation with Dr. Marvelous prior to my external radiation, she mentioned an epidural might be best to limit my exposure to multiple doses of anaesthesia.  I thought it was something floated by, something to be discussed with me in more detail beforehand.  Nope.  Within a few hours of being there I met Ten, an anaesthesiology student who walked me through what to expect (and do) during receiving an epidural.  He told me to arch my back like an angry cat or shrimp... I won't forget it.  Soon after, I met with another anaesthesiology student who had to start an IV line because the IV Team couldn't.

After my husband and I had lunch, my bed was fixed and I was transferred into it.  My husband stayed in his uncomfortable chair the entire time we were there.
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I was given two bed baths in preparation for the operating room.  The first was given to me by a sweet, gaming girl.  The second, by a matronly nurse with seven children who told me, after I admitted I was nervous, that she had a kidney transplant a long time ago... that what I think will be.

I had blood drawn early that morning and was taken down to a "waiting bay" before the sun rose.  City Block Hospital has a "Transport Team" that moves you, bed and all, to where you need to be.  These are some of the nicest people in the hospital, though everyone was great to me.

I was given my epidural by Ten and another anaesthesiology student with an anaesthesiologist overseeing.  A lovely nurse held my hands and helped me balance the entire time.  It was easier than I imagined.

Soon after, I was put into another waiting area as the operating room was prepared.  I met even more new people.  The anaesthesiologist with me in the operating room sang "Jingle Bells" and spoke of his unabiding love for all things Christmas.  Dr. Marvelous held my hand in the operating room until everything was ready.  The doctor I call "the second surgeon" (Dr. U.) was in the operating room as well.

On top of my epidural, I was given more medicine that kept me calm, though not asleep.  I zoned out after a time, so I only remember certain parts.  I know the ultrasound tech was called in to verify the placement of the delivery system inside me.  I remember parts of the gynecologic exam I had after I was first scrubbed down.  I remember not caring about who saw what part of me, even though there were a fair amount of people in the room (City Block Hospital is a teaching hospital).  I remember everything being finished, but the memory of getting back to my hospital room is hazy.
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I had my first scan that afternoon.  It's basically a CT scan without the IV or breath-holding.  The scan is to check if everything placed inside is still where it's supposed to be.  I had one both days I had internal radiation.  I met even more new people.  I swear, half of those girls were named "Amber".

Once it was confirmed nothing shifted, I was given my first dose of internal radiation in another room.  The machine is much quieter than the external radiation one.  There was no transferring to another table.  It was by my feet, not something that swings around my body.  It would sound like puffed air with only the occasional louder click.  I still jumped, though.  I tried not to.  The material that goes through the internal system looked like tiny, metal beads on clear wire.
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I had the epidural in me until after my final treatment was over because the system was in me for the duration.  I got so hot, but they don't allow fans so I had to use a cool washcloth on my face.  I didn't have pain from my waist on down, but everything else ached because I couldn't roll over or sit up from early Monday morning until Tuesday night.  I didn't eat much because I was scared of choking.  I itched.  They stopped my bowel movements because I couldn't shift to be cleaned.

There were times I told my husband I couldn't do it, couldn't manage until everything was over.  I threw up a bit, once, because I got heat sick.  My IV blew out so they had to use an ultrasound machine to find a new vein.  They put me on a normal hospital bed after the operating room and I never slept on my bariatric bed again.
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Tuesday night, Ten took out my epidural.  As soon as I got my feeling back, I wanted my catheter out.  Unfortunately, I had gloriously painful hours of my body trying to reject it before it was removed.

The night techs took a sponge piece out of my bed and changed my sheets.  After that, things got a little better because I could move more freely.
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Early Wednesday morning, I started having issues with urination.  I would go frequently, with almost no warning, and zero hope of holding it until the bedpan arrived.  I would go every twenty minutes... tops.  I started to think I wouldn't be able to go home,

Thankfully, everything slowed down just enough when the IV was removed.  Mr. Davicob and I made the three-hour trip home without incident... where I promptly peed all over the bathroom floor.  At least it's tile!

Brachytherapy, hospitalization, more stress

Monday, I was told by the nurse at the external radiation hospital that the next hospital might want me by the following Monday.  I hadn't heard anything about it.  My case manager emailed to say the hospital said I'd be going into the operating room on Monday.  The next day, while I was at treatment, Dr. Marvelous' hospital called and told my husband I'm supposed to be there at noon on Sunday.

I need to coordinate my van rides.  I need time to process.  My husband and I were informed there would be a regular appointment before I went down for my brachytherapy.
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My last external radiation treatment was Tuesday.  I almost got weepy, leaving my team for the next thing.  They presented me with a cute "graduation certificate" about my bravery and all that.  I bet they say that to all the people.

I came home Tuesday with all the new information from my husband and hit the ceiling.  So many changes.  We were the absolute last people to know when we should have been the first.  The transportation company was not answering.  My case manager was at a conference.  I screamed once Mr. Davicob left to run an errand.

The van company called in response to the message I left.  They're low on wheelchair-van drivers and have no idea if someone can take me Sunday.  Am I sure, absolutely sure, I can't have the treatment at a closer hospital?
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Wednesday arrives and I confirm with my case manager that we're to meet Friday to talk things over before admittance.

I cancel my sister Saturday (who I'm barely seeing through this) because that's packing day.

The transportation place calls and says they found a driver.  The long-distance hospital will have to figure out how to get me home because they can't give me a release time.
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Thursday, my wheelchair gets new tires.  The repairman is nice, efficient.  He tells me I should start the process for getting a new wheelchair because it takes quite the while.  I can only focus on the "cancer stuff".  He reiterates four times.
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Today's meeting with my case manager went well, was short.  She's very personable and tries to help whenever possible.

While I was getting ready for my case manager's visit, Dr. Marvelous' hospital called to discuss my medicines.  The woman asked when I had my pre-op physical done... I haven't.  She asked what I was told about stopping certain medications (like my Warfarin).,. I wasn't.  I waited for a call-back most of the afternoon to be told to stop taking my Warfarin from today on out (something I said I was doing anyway because,,, surgery).

This and many other crossed wires, missing basic pieces of information, etc. are making me even more nervous than I would normally be...