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.

Sculpture

When I saw this sculpture - before I knew what it was - I knew it was me.  It took my breath away.  The pain is tangible.  I feel this.

I posted the sculpture on Facebook a week or so ago.  And then I thought about it - thought about my kids - wondered if they think that the depth of my grief diminishes them in any way.  So, I wrote the following - for them.  One read it and thought it was "okay" - the kind of post people post when they want people to tell them how brave they are - how strong.  Knowing my oldest, I was not in the least insulted.  I'm pretty sure he knows that I would not post something for that purpose.  (Pretty sure)  :-)

To the best of my knowledge, the other son never read it.  

An exercise in futility.  Oh well.  

Here it is. 

Just something I need to say. Thanks for your patience.

Although my reaction to the sculpture below that was in a previous post, (“Emptiness”- Original artist : Albert György - Bronze Statue located at Lake Geneva, Switzerland) was immediate and visceral, I think it's important to say that "bereaved parent" is not all that I am. There is (and always will be) an empty place in my life where Greg used to be. He was a big part of my daily life and I miss him every day (sometimes more than I think I can bear). I read that it takes months - and even years to fully grasp the full extent of the loss of a child. I'm finding that to be true.

Having said that... I have two other extraordinary sons and 8 remarkable grandchildren who infuse a huge amount of love and joy into my life. (and yes... don't forget those daughters-in-law)

Sitting at a sporting event, or a dance recital - a play or a concert - or even in my own living room (or theirs), I am constantly amazed at the talents and abilities of these wonderful grandchildren. I'm in awe at their kindness, their tender hearts (some more tender than others), their humor, their strength and determination (bullheadedness and competitiveness?) - all of the things that make them who they are - and each one different from the others. Being in the same room with any of them is fascinating, joyful... and healing.

My life is a roller coaster - especially at this time of year. There are moments of horrible sadness (grief has a life of its own) when the emptiness is debilitating. But there are also top-of-the mountain highs when I get a hug - or an "I love you" - or a text message from a grandchild (my favorite... "I love you so so so so so so so so much"). I cherish the rummy games, the sports events, and the occasional dinners together. I love the "thinking about you" phone calls or text messages from my kids. I love the the pictures and videos sent to me when I can't be there. I am determined to be emotionally present at every opportunity for joy. (Sometimes I'm more successful than others)

This "bereaved parent" thing is worse than anything I could have imagined. There are days it's difficult to even speak, but I won't let it be all there is to my life.

I am grateful for my children, my grandchildren, my daughters-in-law, and for faithful friends who have been so generous with their love and support - and for Michael who is there for me all day, every day.

God is good!

Some of it is heartfelt - some is wrapped in positivity for the my children.   More days than not, I couldn't have written it.

God IS good. There have been days when I've felt wrapped in God's arms - and days I can't find Him.  I don't always "feel" God's goodness, but I know, in my head (and some days in my heart) that He is good.  That will have to do for now.

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. 

Nine Months

Nine months

I saw a red pickup truck with a ladder rack today - one of the biggest triggers for me.   Every time I see a red pickup truck with a ladder rack, it wipes me out.

I don't know how to change that, but I'd love to.  I'd like the site of that truck to make me smile - and remember.  It doesn't seem possible, but that's what I'd like.

For months, I had a hard time finding those happy memories.  The past couple years of Greg's life were hard on everyone.  I probably have more good memories of those years than most, but they don't come easily.

The sad and traumatic memories have been dotted with happy remembrances, but they were few and far between.  In the past month, there have been more good memories - and older memories.  They don't come easily or often, but they have started to come. 

I'm grateful.