Dark Hour of the Soul

Thankfully the darkness has abated.  I am still tired, and feeling yucky, but I am far from  where I was on Friday.  So thanks to you all for your love and support.  It meant more than you know. 

Michael said, well, the good thing about going through tough times is that they can get easier once you know you can make it through.  And I did make it through.  Whew. 

So I am sitting here, on the futon on the living room floor with Curtis sleeping cuddled in between Michael and me.  Michael is also sleeping so sweetly after working a 15-hour day today.  Life is slow, but sweet. And we made it through. 

Happy Solstice and sweet dreams!

It's not over...

Well, the pity party isn't over yet.  I thought that I got it out last night, but who was I fooling. I am still wanting to complain, and maybe once I do a little more, I'll get over myself. 

First of all, I feel like screaming loud and long.  That won't really work right now...seeing as I am hooked up to an IV in a room surrounded by people.  Getting one of the gazillion I have already gotten, and still have left to go.

Second of all, I am tired of all this crying.  That also makes me want to scream. 

And let me tell you about steroids.  They are awful.  They turn you into a red, puffy-faced monster.  As if I don't already feel ugly enough, I get hit with a weight gain of 5 pounds overnight, devil cheeks, sausage fingers, insomnia, ravenous food cravings that can't be satisfied because I can't eat anything I am craving, and irritability. 

I have an anal fissure which is about one of the most painful things I have ever had to deal with.  I've had it for over a month now, and there are no signs of healing.  Sorry if this is TMI, but this is the shit I am dealing with, and it has to come out if I feel like I've fully complained. 

I made dinner last night, barely...Michael had to work late.  And me with these darn food cravings, had to eat.  And, we had our CSA food that we insist on eating before it goes bad.  I made rainbow chard, sweet potato, and sausage--all local, all organic, all from our CSA.  This is actually something that made me happy.  But damn if I couldn't make the dinner without having to go and sit down every 5 minutes.  And you better believe I didn't even bother with cleaning up afterwards. 

I was almost asleep by the time Michael got home.  But we had some time to connect and be together.  We went to bed around 10 and of course...when it is bed time I am NOT TIRED!  WTF???  The damn steroids!!  So I got up and took some GABA and managed to toss and turn all night.

I've been awake since 6am, and finally annoyed Michael enough with my huffs that he suggested we get up and go for a walk.  I asked it if was raining--he looked outside, and said NO!  So we got all dressed and bundled and Curtis all excited, to open the door to ...rain...Oh well, were were up and about, so we braved the rain and wind.  And it was kind of funny. 

We come in, and I am cold and wet, but can't take a warm shower because I have this port needle in my chest.  And CAN'T shower 4 days a week.  So I huffed about that and proceeded to make breakfast in the small space I could find that wasn't junked up by our dinner dishes. 

And then I can't get dressed because everything I put on makes me feel fat, and I hate the way that fabric feels on my body.  I soak my puffy eyes in a warm wash cloth, and I just realize there is no use.  I am ugly.

I just don't feel good. I don't feel good.  I don't feel like myself.  I have a vice clamp over my brain, I am foggy headed, tired and just plain yuck.

I feel nausea begin to set in, and just think, great...welcome back.  Glad to have you.  And I pack my bags and head to the doctor.

***screammmmmmm***

I'm just in a funk.  It took 6 treatments to get here, but I have arrived.  I will get an attitude adjustment soon, but just give me this for now.

art by http://www.louisagiffard.com

Pity Party

I finally got to talk today to a woman at the clinic who I've been seeing there for awhile, but we've never connected.  I knew she had breast cancer--and she's only about 5 years older than me.  Today I find out that she has two little kids, a wonderfully supportive husband, and breast cancer metastasized throughout her body. She was waiting to hear today whether or not it is in her bone too.  WOW, talk about heavy.  She's been on all sorts of chemo, radiation, alternative stuff, etc.  And it is still spreading.  Her heart and lungs have suffered damage from all of the chemo.  She's been fighting this for over two years.  She remains upbeat, and I find she takes strength from her family and friends.  She doesn't talk much while at the clinic--she usually just curls up in a ball and sleeps.  She said a friend asked her how she doesn't just want to give up.  She says she just takes one look at her little ones and knows that she absolutely can't.  She is a fighter. 

So it was good to talk to her today of all days.  It snaps me back into reality.  I've been having a pretty tough week--even before the chemo on Wednesday.  I just felt so tired no matter how much I slept.  I've been feeling down about work and how I can't seem to manage that very well.  My brain feels foggy if I have to think about science things.  And I see how I am not able to manage all the projects the way I'd like to.

And it started on Tuesday night that I got these voices in me screaming---NOOOooo I don't want to go tomorrow. I don't want to do this again.  And all morning on Wednesday...it was like I was a kid having a tantrum.  I...don't...want...to...GO!!!  aahhhhahhhH!! I was in such a bad mood. But I went.  And Michael took me there kicking and screaming.  And I did it.  And cried the first 20 minutes of it all.  I couldn't stop crying.  The nurse and Michael just let me cry.  Which was nice.  There are only so many I'm sorry's I can say when explaining my episodes.  Michael held my hand.  I just couldn't stop thinking that if I go by what the Dr. says, this is only half way.  HALF WAY!  And then I just get to crying again and have a good old fashioned pity party for myself.  I keep hearing Grandma saying...somebody punch her TS card!

Michael dropped me off at my parent's house after the treatment because it was close to work, and he had to go back there for awhile.  jI finally got to watch the Top Chef season finale (we cancelled our cable a week before the last show). Kevin, my favorite, and the Atlanta local chef for Woodfire Grill--amazing btw!!, didn't win.  So I was diappointed by that. 

After the show I talked to Rin for awhile, and then my parent's came home.  I can't tell you how nice that was to lie in their bed, with their love surrounding me.  Mom sang to me the Gaitrya mantra while rubbing my head.  Dad gave me some good suggestions for helping heal some wounds.  Then Michael came over and we four just hung out in their bedroom chatting til we got hungry enough to eat.  Mom threw together a nice meal.  I like being around people I love...it really helps lift my mood. 

And then, here comes the night...We went to bed, and the tingly arm and leg I'd been noticing ever since the chemo treatment  felt like it was getting worse.  OH NO!!  Neuroapathy....what they all say might happen.  It feels like when your leg falls asleep, and it is just beginning to wake up again..  And you feel like you need to shake it to help get the blood flowing.  Well, I felt that way all night.  So much so that Michael had to leave the bed and sleep on the sofa because he couldn't sleep.  Even when I did drift off, he said I was twitching all over.  I felt so guilty, but he wouldn't let me sleep on the couch.  I didn't sleep very well, and just worried (I am good at that) that this might really be happening.  So I try to practice that thing I said I would...trying to cope.  I laid there and envisioned my discomfort, and imagined that it dissapates.  And to focus on my breathing, and mantra, and release.  So I did get some sleep. 

I woke up this morning with the sensations gone...so I hope that I have evaded the neuroapthy monster another round. 

And, well, as we all know, Eve on no sleep makes for an unstable girl.  So I am still crying.  My outlook e-mail crashed today while I was at the clinic...just after I had constructed a long e-mail to a co-worker who was presenting something for me because I couldn't be there.  I lost the e-mail, so decided to call her.  And, well, I should have waited to call her until after the serious frustration subsided because I ended up just crying when she answered the phone.  So professional.. But we chatted, and she gave a great presentation. 

And then I got to finally talk with the woman I'd been wanting to talk to for awhile, just to hear her story.  And she's got it rough.  My situation is cake.  So pull those boot straps up and keep marching old girl!!! 

I think I just need to take it one day at a time, and not think about how much longer I have.  That should help, right?  And besides, we all know how fast time flies. 

The picture above is one that my parent's took of me when I was young.  I wanted to go outside and play in traffic...the world was going by without me!!! But when they said no...well, the picture speaks a thousand words.  I was channeling that little girl yesterday. 

Vanity? Illness? Milestone? Who knows...

So we have noticed lately that my hair is getting thinner.  I keep asking Michael every day...like I am seeing it wrong, and it is really not happening.  Does it look thinner to you today?  He always just nods yes and kisses me on my forehead.

I don't know, it is not like this is surprising or anything.  We've known from the start that I will lose my hair.  It's just funny--the way it's happenend.  I remember thinking after my first chemo, when I didn't lose any hair.  I thought, wow, maybe I'm different, and it won't happen to me.  And then it did.  And now that I've cut my hair short, I've consistently noticed hair on my pillow, and on my shirt.  But it is still there.  So I thought, hey, I'm not going to go completely bald.  Until I start noticing that there are bare patches.  And the length that I have it accentuates it.

So tonight I asked Michael to shave it closer to my head.  I thought if the hair is shorter, it will just lay down on my head instead of sticking up, and cover up the bare spots.  It'll look more like I am not going bald.  And so he did it.  And, well, no matter which way you cut it, it is hard to cover up the fact that yes, indeed, I am going bald. 

I've been pretty stable these past couple of days even though today, Friday, was the first day I've felt normal again after a chemo round.  Normally this has happened on a Tuesday or Wednesday.  But emotionally, it has been okay. I've just been tired and head-achey.

So tonight when, at one moment I was fine, and looking forward to trimming the hair, I find myself crying in front of the mirror while Michael takes the scissors so lovingly to my stray hairs on the back of my head. I don't know where these tears come from some times.  This is NOT a surprise.  And I still have more hair than I've expected to have. So I don't know.  It doesn't seem like vanity, it just seems like this hair thing is an outward expression of my illness.  Which is so weird because the more hair I lose, the smaller my tumors get. 

There I sit...crying in the bathroom, and I hear my phone ringing.  And it is Michael's parents.  I try to talk to them, but can't.  So Michael takes the phone and says we'll call them back in a bit.  And then I just cry in Michael's arms.  Ahhhh....there I go again.  Vomiting tears.  So strange. So strange. I know I keep saying this, and I guess I do so because I still don't know what to make of it.

I know for certain that I have cried more these past several months more than years past combined.  But once the crying spell is over, it is just that.  Over.  I don't feel despair, or depression.  None of that.  Exhausted at times, for sure.  But not depressed.  Even lighter at times.  So that makes me think that this is all okay and just a part of it.

Anyway, this post, well, I don't even know where I am trying to go with it.  Other than to say that my hair is really short, and a lot of the way gone.  I loved talking with Michael's parent's tonight (once I regained my composure).  I am still getting used to the fact that I have these new parent's who love me like their own.  It is nice.  And since then I've gotten calls from my brother Krishan, and my uncle Jim.  For someone who doesn't like talking on the phone, I've had a pretty great night.  A walk with the dogs and my sweetie, delicious, healthy food, love, and catharsis.  Now it's time for that good book....Good night!

photo from www.istockphoto.com

It's been way too long...

Everyday I wake up and think I need to spend some time on this site to let you all know how I am doing.  You all have been SO amazingly supportive and loving, and the last thing I want is for you to worry about me.  So, the answer to the question...how am I doing?  Well, I can safely say I am doing well.  Now, if you asked me if I am ready for this to be over, ...you can bet I'd say FOR SURE! 

I've now completed 5 chemotherapy sessions and countless vitamin IV C therapies.  I keep going back to what that chemo nurse said to me on my first visit.  Keep a diary...it will help you know when to expect what.  Well, I have learned that there is no expecting, and no set rules as to how I will feel and when.  Round 4 of chemo was the easiest round for me as far as side effects.  I thought I just might be getting used to it, or resigning myself to it.  But I realize after round 5 that, well, again, there are no rules.   The good news is that in round 5 I had my period.  This is not good news really, it is great news!!  My female parts are still working.  But with that joy also comes heart ache as the hormonal roller coaster on chemo is a tough ride.  yin and yang.  That is the one thing I have come to expect.  Joy and sadness, hard work, and ease. 

Probably also because of my menses, my blood counts have officially dropped to anemia levels.  And I feel it.  I am tired.  And I fatigue easily.  Sunday (and for most of Saturday actually) I didn't leave the house once and relished in the joy of my living room, a book, good musics, my sweetie, and the cold that invites the cozy.  I took lots of baths.  Got a massage.  And really just was. 

And that just being is an interesting exercise in itself.  I have always been an on the go kind of person.  I don't remember being so decadent as to lying around most of the day, let alone ALL of the day.  For two days at that!  But this is forcing me to slow down.  And see what happens.  It'll be interesting if I try this slowing down thing when I feel good.  I wonder what will happen then? 

Today I couldn't wait to get home and lie on the futon in the middle of my living room.  I had intentions of being at work today.  We had the holiday luncheon, which I made by skipping my hyperbaric treatment.  I was overwhelmed today by what my parent's have created out of nothing.  They are healing people worldwide with the help of this amazing team that was all congregated in one room today for our celebratory lunch.  Blew me away actually. 

After the lunch I was faced with an afternoon of consults.  Booked solid from 2-5:30.  And I suddenly got all panicky. I can't be here that long!!  So I bolted.  Literally...I thought..I can make it home by my first one.  And i did.  And I worked all afternoon, feeling accomplished, while lying down next to my warm dog on the floor by the light of my tree, the rain drizzling, and the cold keeping me wanting to snuggle with a blanket. 

Now, as I write this, I kind of laugh.  Because so much has happened these past three weeks that I've been silent.  I'd love to write all about these up experiences because there have been many!!  Again, I can't help but think that I don't think my life could get any better if it weren't for this illness.  I've been wrapped up in the magic of my female friends in an amazing healing day, I've enjoyed Thanksgiving with family, I've camped with my beloved in the beautiful hills of North Georgia, I've celebrated his birthday for a week, I've had friends warm the home the way friends know how to do perfectly. Those same friends gave Michael the birthday love he deserved, being the caregiver these months.  I feel surrounded in love. 

And then I've had problems with my port, and nausea, and fatigue, and stressful situations at the clinic, and overall crying fits. 

This is such a strange strange time. 

And I had a stranger approach me today at the clinic and ask if he could pray for me.  Well, I guess he wasn't a stranger, because I've seen him several times before.  But he said he's been seeing me here, and was drawn to pray for me.  An awkward experience in my mind, that really, surprisingly wasn't so awkward.  It was like my defenses were down and when he came over I was just focusing on the parts of his intentions that were good and loving.  And so he prayed for me, while holding my cold hand--warming it.   I have never thought that Jesus Christ died for my sins.  And that God is a puppeteer that controls my life.  I have also never appreciated people pushing their religious views on me.  But strangely, in that moment, it felt peaceful.  And I just let be what it was.  A man wanting to speak from that place in his heart that was good, kind, loving, supportive, courageous, and strong, to all those places in my heart.  Love is the great equalizer.  It is a universal language.  And then it was over, and he sat back in his chair.  And it was sweet.  His name was Joe. 

A few minutes later a woman is brought in the clinic by her daughter and husband.  She is new, and is not doing so well. I don't know her story, but she's obviously very sick.  She's in a wheel chair, and tears up a lot.  Her husband...is...so...so...so...kind and loving to her I can barely watch it for the tears it brings.  Her daughter too.  Love, is so strong an emotion that it brings such joy, but can also rip you to pieces when you see someone you love suffering so.  Strangely, I wanted Joe to pray for them to. 

So these are the ramblings from a girl who's not doing so bad.  Yes, I have moments where I want to scream and say YES, I can be in a bad mood, and mad that I feel crappy, and I don't want to put on this happy face. And I do.  But mostly, I feel okay with putting on this happy face because life is good.  And it could be worse. 

I know I get sappy saying this over and over again.  And I just read Secret Life of Bees which was the absolute perfect book to read right now.  But love truly conquers all.  And I wish there were more words to explain love.  Like August said in the book...we use the same word for the way we love coca-cola and peanuts, as we do when we love our mother. 

So here's to sending lots of love to you all.  And hopefully it will be infectious and you will send love to all those who you love, and they will to them.  (Sorry Bob if this is too gushy...)

I just finished this post and went looking for a photo.  I typed LOVE in the google image search and found the image above.  How perfect is that for what I just said?  Which ended up leading me to this website:  http://www.owningpink.com/  Nice. :)