Coming and going

I had hopes in the beginning of writing every day.  After reading the first few months of this (after I promised myself I would not go back and read what I wrote), I couldn'e help but think how depressing it was - couldn't possibly help ANYone - and wondered if it was good for me to write every day.

A cancer diagnosis solved part of that problem for me.  There are days I'm just too exhausted to do anything other than the things I need to do every day - the "one-foot-in-front-of-the-other" things that keep me from thinking any farther than the next hour.

So... I come and I go.  I don't like it, but it's where I am in my life at the moment.  Maybe tomorrow will be better - or next week maybe.

I feel better today than I have for quite a while (remembering that everything is relative).

I didn't feel great this morning, so I went and plunked myself on the sofa (a reclining sofa) in the den - put my feet up and my head back - and I fell asleep quickly.  Sounds perfectly normal - until you understand that we are having construction at our house this week.

Downstairs, in the basement, the plumber (let's call him Dave) is breaking up the concrete floor in order to add a powder room there.

In the garage, a concrete guy (let's call him Joe), who had already broken up and removed our garage floor on Monday, was filling the garage floor area with gravel and tamping and leveling (I guess) the gravel with a machine that sounded like a helicopter was in our garage - truly.  It was so loud, that Michael and I had to yell to talk in the den (the garage is on the other side of the wall where the sofa is located).

Michael left - I fell asleep - with the helicopter machine behind my head - growling and sounding like a helicopter.  I probably slept close to two hours.  It was likely that the silence of the helicopter-sounding machine being finished was what woke me up.

After I woke up, when I saw Michael, he looked concerned - couldn't believe I could fall asleep with that noise.  He said he came and checked on me several times.  I was sound asleep.

"How are you doing?," he asked, his brow furrowed with worry.

"I feel SO much better after sleeping!"  I'm going to take a shower, get dressed, and get my day going.  He just hugged me and told me he loves me - which I appreciate.  He thinks I'm "just being brave", but I really do feel pretty good - a far cry from three hours ago.  This is how it's gone - up and down in the same day - often within a couple of hours.  Crazy,

This whole experience is just strange - not definable - barely describable - it just is.  And what is true this minute may be entirely different an hour from now.

And once again, like ripples in a pond, this affects everyone I know and love.

Minute by minute - step by step - in faith - trusting God.  That's all you can do. 

A little about chemo

Today was my last chemo.  That's what the doctor said, so I'm going with it.

Her first words to me today were, "I'm really on the fence about giving you this last cycle."  (worried face, scrunchy face, closed face)

"Why?", I asked in my most pleasant voice.  (smiling face, convincing face, open face)

I knew why - fainting - concussion, but I wanted something to argue with, so I let her go first.  I wasn't prepared for what she said - or her passion.  She never fails to surprise me. 

"I love your brain.  I LOVE your brain and I cannot damage it.  If you fall again on top of this last fall...."

"I won't fall," I told her.  She laughed,

I'll spare you the details, but when Richard (did I mention that Richard took me for my last chemo?  So special) explained the visit to Michael he said...

"You know how when kids want a puppy they say... I'll feed it - I'll give it water - I'll walk the puppy - I'll clean up it's mess - I'll pick up its toys - I will - I will - I will!   Well... that was mom working on that doctor today."

My best argument was that with the information that I got on Monday (Oh!  I was in the ER at Penn on Monday with a crazy high heart rate and an active SVT [superventricular tachycardia] episode - tested - monitored - hooked up to anything they could find to hook up to me - finally released about 8 hours later) AND with the information that she was about to give me (because I was counting on a discussion), I had a much better chance of controlling the fainting than I did of curing cancer.

The original node that I found was 11cm x 9 cm.  As of the last PET scan, that node was 2cm x 2cm and cancer free,  BUT, if there are any nodes left - no matter how small, I'll need radiation to get rid of them - cancer free or not.  Without radiation, they will replicate themselves and well... no thanks.  I told her that if this last round of chemo had anything at all to do with whether or not that node would be gone, then there was really no question.

Some more chatter, rules, pointed looks from the doctor at Richard, making him promise to follow up and make sure I'm doing what I'm supposed to be doing (and not doing what I'm supposed to not be doing).

This concussion scared me.  Concussions are no joke.  My brain is damaged.  I can feel it every day.  Hopefully, it will heal.  I do not want to do this again!

I was selling hard... and it finally paid off.  Sunita agreed to the last cycle of chemo.

About five and a half hours later, I had finished my last chemo and Richard encouraged me to ring the bell on the way out.  It's tradition when you finish your last chemo, that you ring a big brass bell on the way out - maybe as an encouragement to those receiving chemo that day,  maybe as a celebration.  I didn't want to do it.  I'm not much for hoopla, but Richard really wanted me to - so I did.

After I rang the bell, I have to say I agree with Richard.  It was a good thing to do.  He said it was like putting a period at the end of a sentence and he was exactly right.

Bell rung - period placed - now to get through the next two weeks without fainting.  Moving on.

Brain rest

Not my best week.  Last Thursday was chemo (always a fun time).  Friday was a typical, sleepy, day after chemo.  Saturday was... an adventure.

I got up late, read my morning devotional, and then started my newly defined morning routine - brush my teeth - do a fluoride rinse for my teeth and gums - next the salt water rinse for the sore post-chemo mouth - and lastly, a rinse with liquid Benadryl and Maalox (Magic Mouthwash).  Yummy.

I didn't feel great - oxygen levels and heart rate were kind of all over the place, so I did a lot of resting between rinses and then sat and waited until oxygen and heart rate were stable (I spend my life with a pulse-ox in my hand).   Everything seemed okay, so I turned on the water and got in the shower.

I'm not able to stand for more than (maximum) 2 minutes due to lung damage, so I have a shower bench, which is placed in corner of the shower (this is a very small stand-up shower) so that I can sit and lean in the corner and let the water run over me (Greg set it up that way when he fixed my shower).

I took my normal shower - felt "okay".  I normally finish my shower by washing my hair (or I should say... head), and then washing my face.  I washed my hair as usual (with my eyes closed because of the shampoo) and everything seemed fine until I opened my eyes.  As soon as I opened my eyes, I knew something was wrong and decided that I should skip washing my face - and get out.  That was the last thought I had - until I woke up, naked, face down on the ceramic tile, bathroom floor, hearing Michael yelling my name on the other side of the door.  He said he talked to me for at least 30 seconds before I answered.

I finally answered and told him that I was okay, but confused, and that I was just going to lie on the floor for a couple minutes and regroup.  My body was blocking the door, so that the door wouldn't open.

Eventually, I was able to get up, grab my housecoat, and sit on a bench inside the bathroom door and let Michael in.  He helped me to the bed and I decided to just sit for a few minutes until my head cleared.

I could see and hear him talking.  I knew he was saying words, but they didn't make any sense to me.  I tried to touch my head, but it was too painful to touch,  I had a lump the size of an grapefruit (okay... and apple) over my right eyebrow.  There was stabbing pain on my entire right eyebrow and my right eye.

Michael got me an ice pack, but I couldn't put it on my face.  The ice was too sharp. I couldn't bear it.  Next we tried a gel pack.  Although I sobbed in pain, I forced myself to put the frozen gel pack on my eye -  a couple seconds at a time, increasing time slowly.

I spent the day trying to ice my face, eye, and forehead.  We finally decided that we should call Penn and go the ER.  I called my doctor's service and the on-call doctor paved the way for us.  They were ready by the time we got there.  We should have gone in the morning... but we didn't.

When we got to the ER, they put us in a room (in the ER) right away, did an EKG, hooked up a heart monitor and IV.  They were afraid that I had broken the orbital bone around my right eye or that I had a brain bleed.  I apparently gave my brain quite a jolt.  My eye was swollen shut and the lump on my forehead was now down to the size of an apple (okay... a lemon).  Yay, ice!.  I thought my nose was (re)broken, but the CT scan showed no breaks.  Unbelievable that I didn't do more actual damage than I did.

ANYWAY...  I still have some shorted connections  - like trying to put the lid for the superglue on a Sharpie (didn't work) - or typing a text message this morning that I forgot to send.  It's a little better today than it was yesterday, but it's still there.

All of that to say, that I've been trying to rest my brain - no texting (almost no texting) - no computer (okay - no computer until this) - no reading (just my morning devotional) - very little TV (define "very little") - no bracelets (orders are backing up).  Deviation from "the rules" results in a nasty headache.

This is rambling and disjointed and it took three sittings to write.   And it's been a "just the facts, ma'am" post without telling how I felt - the terror - the residual fear of taking a shower.  I'm a mental mess. 

AND... this is the second time I've fainted like this.  The last time was 2 chemo cycles ago.  The doctor thought it was due to a quick drop in steroids - turns out... not so much.  Last time I fainted before I got into the shower.  Same thing, though - face plant on the tile floor, but much less damage than this time.   Will there be a next time?

Where do we go from here?

Quitter vs Pauser

For the record, I didn't quit.  I thought I did, but in reality... I just paused... for a lonnnnng time, but I'm back so that's proof that I didn't quit.   (That''s my story and I'm sticking to it.)

It got to be too painful.  I don't know what I expected, but this has not been "it".  I knew it would hurt.  I knew it would change me. BUT... I'm an overcomer... a fighter.  I thought every month it would get just a little easier - that time would help.  It doesn't work like that.  I thought I could "handle" the pain.  I was wrong. 

A week and a half ago, I was as close to suicide as I could be without actually committing suicide. What stopped me?  A sudden vision of my oldest son - the pain he is feeling now - and the knowledge of what it would do him for the rest of his life if I took mine.  Divine intervention?

That day I wrote:

If I had a way to do it
I would have done it today.
Too late now.

No more pain for them -
no matter the cost to me.  

Going through the motions -
screaming inside.

Smile.

Yesterday I had a hopeful day - posted happy words on Facebook - and got lots of support from people who actually think those words mean something more than having "a good day".  They think it means I'm a trooper - that I've got this grief thing under control.  They don't understand that it's fleeting - it's a feeling - it's not a definition of who I am.

I saw 3 of my grandchildren on Wednesday night - just for five or ten minutes when I dropped something off at their house, but it was enough.  Life makes more sense when you're hugging a 6-year-old - or an 8 year old - or an 11-year-old... who, by the way, gave her 8-year-old sister a nasty elbow shot to push by her - to get to me.  It was just what I needed and it made my day. I'm in charge of love - not discipline.  :-)  Wednesday night - got me through Thursday.  That's how I roll. 

This morning, I put my head down in the shower and let the water run over my head and face - and cried for about 10 minutes.  I miss him all day - every day.  There is no relief from grief (a term that is too liquid to hold in your mind).  There are days that have real joy in them - days that I'm incredibly grateful - but the loss is always there.  Always.  Under the joy - under the gratitude - under the smile - it's still there.

When I finally stopped crying in the shower, I got out - got dressed - and went to Philadelphia for a PET scan.  I was diagnosed about 4 months ago (I think - I lose track of time) with stage 4, lymphoma.  I'm trying to find space in my life to have a feeling about this, but I can't afford it right now.  I'm just moving forward - some days I'm sure I'll be fine - some days I just don't care.   Unfortunately, I'm sure you'll hear more about this, but I assure you, this is insignificant compared to the loss of Greg. 

Tomorrow?  I don't dare anticipate.