Halloween memory

Richard stopped by tonight on his way home from work.  I fainted yesterday, did something to both knees, and was unable to walk. I have a lightweight (35 lbs) mobility scooter in the basement that I use to gather leather, etc. while making bracelets.  While Richard was here, I asked him if he could possibly bring that scooter up.  Michael had been pushing me through the house on a rollator since I fell.   ANYWAY... that's not the reason for this post.

Richard stopped by and we were talking about some work I was having done to the house and that the man doing the work (let's call him Brian) was someone who graduated with Richard.  Richard didn't remember him at all.  Didn't surprise me.

Brian told me that he played American Legion baseball with both kids but knew Greg better.  He cried when he learned that Greg had died.  He also told me that he had a history of drugs and that he had been sober for 13 years.  Now I knew why Richard didn't know him and Greg did - kind of.  That's not really the reason for this post, either.

When Richard left, Michael walked him out to his car and as they talked, Michael mentioned that one thing he has learned is that the McKinnons were well known in this area and that we keep running into people who knew them - and it often worked to our advantage.  Richard laughed.

He told Michael that Greg knew everyone.  Richard remembered one Halloween when he and Greg were 12 or 13.  They were walking down the street together and at one point they heard a group of kids behind them.  The kids' behavior identified them quickly as thug-type kids.  They kept getting closer - their language threatening.  Richard said that it was becoming obvious to Greg and him that they were about to be beaten up - their candy stolen. The kids behind them continued to get closer and louder.  At the last second, Richard and Greg turned around and one of the kids, seeing Greg, yelled enthusiastically,  "Hey McKinnon... how you been?" Greg responded just as enthusiastically.

Richard just laughed.  He said that was Greg.  He knew and loved everyone from every part of life.

Greg was voted "Most Popular" in high school.  When he told us, I wondered how many people he had to please to be voted Most Popular.  Greg knew the nerds - he knew the jocks - he knew the thugs - he knew the medically challenged kids - he knew the unpopular kids.

In Greg's adulthood - especially watching him in his own business, I learned that Greg just had a huge capacity to love... people... all people.  He forgave easily - was compassionate and empathetic.  He employed people who needed the work - whether they were a help or a hindrance. He took payment in old cars and cats.  Greg did work for people who couldn't afford to have that work done.  He did it because he could - and because they needed the help.

His light burned brightly and went out way too quickly.

Suicide Day ~ Chemo Cycle #5

One day last month Richard stopped at the house and I asked him how he was doing and how Greg's death has affected him.

His told me that he's angry - all the time.

"At Greg?,"  I asked.

"Just... angry," he told me.  "All the time.  I wake up angry.  I don't know why I'm angry.  I just am."

"You process your way and I'll process mine," he told me before I could ask another question.

"Okay," I answered.

He and Greg were close all their lives - played the same sports - had the same friends.  They were best friends - inseparable.  Although 14 months apart, they were known as "the twins" - the McKinnon brothers - clear through high school.  Richard's loss is enormous - and he'll have to carry that loss much longer than I will have to carry mine.

I don't think I understood until that moment, how profoundly the loss of his almost-twin brother changed Richard's life.

"Does talking about it help you," he asked me.

"It does," I replied.

"Well, it doesn't help me." 

I talk to Richard about everything. I lean hard on him.  I think we'll still be able to share memories and stories about Greg. I hope so.  But if he doesn't want to talk about "feelings" or how he's working through this, I have to respect his boundaries.  I hope it will change, but I'll follow his lead. 

All of that is a preamble to Suicide Day from Cycle #5 of chemo.

I told you about the emotional drop that I experience from prednisone after chemo.  Cycle #5 was the worst to date.

I decided that I was tired - done - ready to die - ready to let other people get on with their lives without being crippled by my presence.  These were not sad, self-pitying thoughts.  I was calm - rational (or so I thought).  I began to Google my medications to see what would take me out the fastest.

As I was gathering pills to kill myself, I had a flash of Richard - just a flash - his face - how he would look like after I died - how my suicide would affect him - forever.

I collapsed in tears.  I knew in that moment, that suicide could never be an answer for me. Never.  No matter what.

God's grace - his infinite mercy - touched me in that flash of Richard's face.

What had I been thinking?  It was then I realized the roller coaster pattern of chemotherapy (therapy?) and the chemical effect on my brain.  Knowledge is power, I've heard.  This experience was the living truth of that saying.

I will be forever grateful for Richard sharing his feelings with me that day - and even more grateful for God's mercy.

When I talked to Woowoo (You remember Woowoo, right??) about what happened, she told me that people contemplating suicide often report a "vision" that prevented them from completing their plan.

Did Greg have a vision?  Was it too late?

Chemical impact

Post chemo week is always an adventure.  When I look at the way prednisone affects what goes on in my head, I can't help but think of all the drugs that Greg took and how the "Greg" of him disappeared into the drugs.

On chemo day I get 100mg of prednisone.  Have you ever taken 100mg of prednisone?  Have you ever taken 40mg of prednisone?

100mg of prednisone makes me feel like I can leap tall buildings in a single bound.  It makes me feel like the impossible is just within reach. It makes a lot of my physical pain a vague memory.

Chemo day in the oncology world is known as Day #1.  In addition to the 100mg of prednisone I get on Day #1, I also get a pretty large dose of Benadryl (for reactions to the chemo).  The Benadryl counteracts the prednisone, making me sleepy.  The night after chemo is usually a good night - no pain and Benadryl helps create a deep, dreamless sleep (a welcome change).

But on Day #2 I get another 100mg of prednisone.  Sleep that night just doesn't happen.  My eyes are wide open - my mind is on super-charge.

On Day #3, yet another 100mg of prednisone.  Sleep?  Not a chance.  But I'd be happy to talk to you - all night - non-stop.

So, now I've gone two nights without sleep - and then the fall begins.  On top of the effects of sleep deprivation, we now cut the prednisone in half, from 100mg to 50mg for two days on Day #4 and Day #5.  On 50mg of prednisone, sleep is still sketchy at best.  On Days #6 and #7, we cut the prednisone in half again - from 50mg to 25mg and Depression replaces the feeling of well-being.  Thoughts of suicide - feelings of hopelessness - exhaustion - confusion - and the pain is back.

Today is suicide day.  I woke up this morning in pain, this hideous oxygen tube strapped to my face, heart rate too high - oxygen levels too low - almost no hair - my skin the color of chalk.  I wonder why I'm doing all this - knowing that everyone around me would have a simpler, happier life without me in it.  No doubts.  Certainty.

And then I remember that today is Day #6 and I'm sitting in the first car of the prednisone roller coaster - strapped in tight. I know that everything I feel or think today is due to the chemical onslaught that my mind and body have experienced since Day #1.  I'm just a passenger.  I have no control over this ride.  All I can do is hang on until the ride is over - promise myself that I'll make no decisions - take no actions until the ride comes to a complete stop.  No matter what I think - no matter how I feel - I will make no decisions today. 

This has been a pattern for every cycle of chemo, but I didn't recognize the pattern until the previous cycle.  Someone should have warned me about this.  Last month, it almost cost my life (more tomorrow).

Greg didn't appear to know how much the drugs affected his mind - his thinking - how altered he could become.  He didn't seem to understand that much of his loneliness - his feelings of isolation - and of hopelessness were drug induced.  As the highs got higher, the lows must have gotten correspondingly lower.

I've seen God's hand in my life over and over again in the past year or so - his mercy - his grace.  I know that Greg begged God for help - cried in anguish to God for help.  Did he have to find his help in death?  Was that the only way for him?

There is no peace in understanding - firsthand - the death call of drugs.

Brain rest is a fantasy

No such thing.  I can't write much about this, but I have to at least give it an attempt.

Sometimes music helps.  Sometimes it doesn't.  So many memories.  So many connections. 

When I try to empty my mind, it doesn't really empty.  I can get rid of the stuff that's there:  make an appointment for blood work - call American Home Health about getting oxygen - text Brynn and congratulate her on her tournament win yesterday - what kind of bird is that - Sim is back from vacation - geez, my forehead hurts - these sandals are shot - and on... and on... and on...

But as soon as one thing slides out, it's replaced by another.  As long as I'm busy, the thoughts are busy.  When I slow my mind, try to relax, I lose control of the thoughts and the ones that slide in are images of Greg - hanging in his workshop - or on the autopsy table - or screaming through the house - exploding out the front door as two ambulances and three police cars pull up to the house, lights flashing - or crying in my arms.

How do I empty those thoughts and images from my mind - my heart - my entire being?  Oh!  I wish I could. 

Rest your brain.
No computer.
No texting.
You can't heal without resting your brain.
No reading.
Very limited television.
Did you know your brain can take from 100 to 500 times longer to heal if you don't rest it?
No jewelry.
Stop planning.
Stop thinking. 
REST!

Can't do it

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.

Little things

Some days it's the little things that drop me.

I decided today that I'd better start catching up with the orders in my Etsy shops that are backing up while I've been taking my "brain rest".

I fired up the ol' printer, turned on the laptop - and reached for my computer glasses (yes, I have glasses in multiple strengths - in every room).  And then I cried.

I love these glasses.  They're cheap - not fashionable - not even cute, but they are the perfect strength for my workroom computer and oh-so-comfortable.

I remember the day I broke them.  I dropped them on the floor - and then accidentally rolled my chair over them, breaking off the right temple.  It was broken in such a way that there was no way it could be repaired.  The part that held the screw was broken off.  They were done.   I left them on my desk and quit for the day.

Greg found them the next day (he was always in my "stuff') and brought them to me.

"Mother... Do you need this side to bend?", he asked, holding the glasses (which were now in one piece) by the right temple - and grinning.

"What did  you do to them?  They were in two pieces!"

"Not any more," he said.  "I glued them." He let go of the temple and sure enough, they were glued together.  "I know you like them.  If  you don't need them to bend, they should be good for a while."

One temple bends - the other doesn't, but that's okay with me.

I hugged him and thanked him - they're still together - and I still love them.

One more "little" thing that reminds me of him every day.  Some days it makes me smile to think of his thoughtfulness.  Some days I can't get past how much I miss him.  Today I miss him so much I ache. 

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?

Beyond the first year

I thought the first year would be the worst year.  I was wrong.

I thought if I got past Greg's birthday the first year... his boys' birthdays... Thanksgiving... Christmas... Father's Day...  all of those "firsts"... I thought I'd be okay.  Maybe the next year wouldn't be quite as bad. I knew it would still hurt, but maybe it wouldn't hurt quite as much.  Maybe I'd have just the slightest room to breathe.  I was wrong.

The first year was just the beginning of forever.