Thursday, June 23, 2011

Living and Loving

This was taken by dad mere minutes after hearing the good news!

Well, I think most of you know by now, I am officially considered cancer-free!!  And oh boy, what a road we've taken to get here--almost two years of it!  It has been a 10 days since I found out that my stem-cell transplant might not have worked...they found "suspicious nodes" lighting up.  This past 10 days has been one wild ride I tell you!  I have faced my own mortality directly in the face and had to sit with that discomfort until it became comfortable.  I was torn in a million pieces most of the time, and spent much of it trying to distract myself.  And you out there, you reading, you sending me love, you, my friends and family, have helped keep me alive and going during this crazy time.  And then I have you to rejoice with when we hear good news like we heard yesterday.  It feels amazing.  Better than amazing.  Like I truly have been reborn.

We were surprised to actually get the results yesterday.  I already had a pre-arranged appointment with my bone marrow doc scheduled for yesterday to go over the results of my 100 days post test.  So, with surgery Monday, we didn't think that the results of the biopsy would be back in time for the appointment.  Apparently my bone marrow doc has pull with the pathologist at the hospital and not only did the pathologist have time to read the biopsy, he had time to sit down with my doc and the PA and go over the slides in detail and really make sure/explain that the biopsy showed no signs of cancer.  Now, there indeed was a mass that lit up, and one that the doc took out, but what we've found is that it is an enlarged thymus gland.  The thymus gland is important for your immune system, but apparently atrophies in all humans by about the age of 15.  It has happened in some cases of Hodgkins after chemo that the thymus gland is re-ignited and I guess that is what happened to me!  My immune system was raring to go!!

This whole week has been surreal.  We've received bad news after bad news for so long that we all went into this appointment somber and bracing ourselves for what we could possibly hear again.  Fact is, if this came back with a positive biopsy, the disease is considered incurable, because of the short duration on relapse, and I enter into a world of clinical trials and unknowns.  This is hard news to swallow.  And it does happen to people.

So you can imagine the emotion in the room when my PA, the most wonderful PA ever, didn't even bother with the niceties and got immediately down to the real info....that I had a PET last week, that it showed suspicious nodes, that I had a biopsy, and that the biopsy showed NO CANCER!!!  Unbelievable.  There were tears, I lost it of course.  Even the PA was tearing up.  There aren't words to describe the emotions.  LOVE LOVE LOVE was the biggest, and I was there with mom, dad and Michael, and we FELT it.  Deeply, strongly.

The doctor comes in, and of course squelches a bit of our happiness, but even that was hard for him to do.  He said that the surgeon only got 2/3 of the there could still be cancer there.  But there was a 95% chance that that isn't so.  I also mentioned to him that really we can't exhale completely for 5 years, and he said true, but if I relapse again year 2-5 I have a much greater chance of cure than if I did now.

So we came back to our home...and mom, dad, Michael and I sat on our porch, like we did just over a week ago.  Except this time, instead of having the breath knocked out of us depressed, we were giddy, laughing, crying, loving, and letting the world know that I am cancer-free!!!  And then a storm rolled in and we basked in the loveliness that is the summer thunderstorm.  Yes, let it rain, let it wash away your fears.

I had bought tickets over a month ago to see Chris Isaak at Chastain Park last night.  I had forgotten I had done so when all this craziness was swelling around us.  And then on Tuesday I get an e-mail event reminder.  I knew that if I hadn't gotten the results we were wanting, we probably wouldn't have gone.  I am still recovering from surgery too.  But, with this good news, we couldn't help but pack a picnic, put on some rain gear and head to the park, one of our favorite places to go.  (for those of you who don't know I absolutely ADORE summer.  LOVE it.  It is the happiest time of year for me.)  So we got to go out, smile, laugh, love and enjoy living another summer night together.  It was incredibly romantic.  The best part of the night was when he sang Elvis's "I can't help falling in love with you".  It was raining, we were cuddled under the umbrella, singing to each other.  It was so so nice.  We exhaled...

So my biggest love to you all.  Thank you for your outpouring of love and sharing this time with us.  I do plan to respond to you all on FB, but for now I am going to pack up and head TO WORK! First time in 4 months.  I also am sending buckets of love to my dear sister Dawn who is finishing up her own struggles.  Dawn, you are going to ROCK it!!!  And will be done in time to return to your beautiful kids at school.  We are going to be rocking on a porch swing 50 years from now together talking about the good ole days!!

Tuesday, June 21, 2011

post surgery

Hi all.  Feeling a bit drained, so I am not going to spend much time writing, but I wanted to let you all know that I made it through surgery okay.  They kept me overnight with a chest tube to drain the fluids that  collected in my thoracic cavity.  Fortunately I checked out fine today and they let me go home--tube removed.  Now I am recovering at home from another painful surgery.  The good news is that we did this last year and know more now what to expect.  We know that the pain will eventually go away and I will breathe normally again.

We don't have the results of the biopsy and should know by next Monday at the latest.  We are keeping hopes alive that this is just a false positive.  The doctor said he removed "unusual tissue" but it wasn't like a swollen lymph node.  It was more like thickened lymph tissue.  I hope this is a good thing.

The night before the surgery I went and read all the comments you all left me on my previous blog and I can't tell you how much that helped me.  You all are so wise, and kind, and loving.  And I thank you from the bottom of my heart!

Alright, well, sweet dreams.  I'll keep you posted!

Wednesday, June 15, 2011

Let it Rain

So here I sit, another rainy summer (almost) night in Georgia.  The rain feels like a glorious blessing upon the hard, hot earth around us.  The lightening and thunder are a magical play between beauty and rage.  As I sit here on my porch, soaking it in, I can't help but feel content, safe, refreshed, cozy, loved.  There is something about a summer storm that stirs me.

First of all, I'd like to put out a huge thank you to all of you who have sent your love my way.  I have no words to describe how much it means to me that you spent the time to spread your love and open your heart in such a difficult time.  I need your love, and you totally delivered.  So I thank you from the bottom of my heart.  Goodness, my words can't even express my gratitude.  

The news I heard on Tuesday knocked the breath out of me.

"Possible recurrence"

"Suspicious nodes"

"this is shitty shitty news"

"remember, you are a survivor"

By some sort of grace...people say the grace of god....which, in this instance makes me believe, I was with my aunt Becky when Dr. Hamrick called me.  I was with Becky, she's a therapist/energy worker, because I knew that the waiting game excruciating.  I knew that she could help me move the energy that was stress, that was pain, that was fear.  We worked for 45 minutes on this before I even got the call.  And then, the phone rang, and I heard the news, and Becky held my hand tight and gave me confidence to keep listening.  Dr. Hamrick delivered bad news again, how many times now is this??? And again, he imbued kindness, and compassion, and courage and hope.  I still can't believe how much this meant to me, but his words, and his way...I carry with me.  He is a good doctor.  Becky is an amazing aunt.  She held me and sang to me and let me cry.  She even cancelled her next clients because she didn't want to leave me alone.  Expansive love.

When I hung up the phone with my doctor I experienced a rage like I have never had before.  I screamed like I had gone haywire.  I pounded pillows. I cried. I yelled.  Until I felt hollow.

And I sat with that for quite awhile.

Michael and my mom came to get me from Becky's.  Dad came later and we sat on our front porch for a long time processing, and being together, and trying to laugh.

So the news...there are three areas that are lighting up on the PET scan, all in the same area as I have have had before, in the mediastinium (heart area).  Two are very very small lymph nodes that are lighting up very dimly, barely above background.  The other is sort of a sheath that is above my heart, but in front of my thymus.  Dr. Hamrick consulted with Dr. Bashey, my bone marrow doc, and they decided that before we do anything, we need to do a biopsy of the area to confirm that there is even anything to worry about.

Patty sent the most elevating e-mail I've read in a long time listing several scientific articles talking about the incidence of false positives on PET scan with lymphomas after treatment.  From reading, it looks like we somewhere like a 40% chance that there is a false positive.  Wouldn't that be lovely!!??

Last night Patty and Mary came over for meditation.  I was present, kind of.  It was nice to have them there.  Our time together has been solid, and meaningful, and a transformation.  Where this goes, we don't know, but it feels deep, and real, and magical.   Michael cuddled me to sleep last night.  And this morning, I woke with a face swollen from crying like several bees had stung my face.

Mom picked me up at 7am, like old times! And we headed to Northside Hospital to meet with the surgeon.  I am scheduled for a biopsy on Monday morning.  So we hold our breaths and wait.  ... again...

I also had an appointment with the pulmonologist today because I failed my preliminary test with at the oncologist on Monday.  Back in January when I was tested I had perfect lung function, and now I am at 75%.  The good news is that it is repairable, and I just need to exercise the lungs and the body.

Mom has been keeping me company, and I really have enjoyed the perks of being 100 days past transplant.  I've enjoyed salads, shopping, walking around without a mask, and even enjoying moments where I take off my head scarf without caring what anyone else thinks.

So this past day has left me sitting in a depression that seems hard to shake. But it seems as if it is not coming from fear of the future, nor out of sadness or worry even.  What I feel is this.  I feel 1. angry, angry that I even have to deal with this, again.  2. jealous, jealous that other's have been healed from this and I keep struggling, (this is the "good cancer" after all), and 3. like a failure, a failure because I feel like if you just work hard enough, you can succeed (remember, I am an A student).  We've tried so many things, and still, we have to sit with this.

And just stating that makes me even more pissed off because all three of those statements are disgusting.  One, anger...well, this is life sweetheart, and shit happens.  Look at all the people suffering right now.  What makes you so special?  Two, jealousy?  I should be happy for the people who have survived and thrived, and I AM, but why can't it be me too?  And three?  well, everyone says this isn't your fault.  And yes, okay, it isn't.  Let's believe it.  

So speaking my mind does ease my suffering.  And in the words of my mother and husband....stop worrying about stuff that you don't even know to be true.  It is true that we don't know what is going on. We need more information.  So yes, that does bring comfort.

Where my mind goes to when it eases away from the suffering is that I can just imagine myself a month, or two months, or a year from now thinking how I've felt as recently as a week ago.  That this journey has been one that has been tough, but has been one of the best things that could have happened to me.   I have a richness to my life that wasn't there before, in mind, body and spirit.  I have made connections with people, myself, and the divine that trump any experience thus far.  I have soaked in the deliciousness of love, of living in the moment, and of appreciation and gratitude.  And I just hope that the lessons going forward will enrich these facets even more.  I believe they will.

So on with living.  I've decided that if I am not in treatment I am going to continue living my life FOR the living, and not put plans on hold because of the "what ifs".  Michael deserves it, and so do I.

Again, you all totally make the world go round.  Thanks for your love, for your kind words, for your support, your hope, and for just being you!  I look forward to many many more years with you.

Let It Rain