Thursday, September 29, 2011

Watch and Wait

Less than a week ago...Saturday to be exact, I had waves of emotion flood through me like shock waves as I rode on the back of a motorcycle with the sun setting over the fall sky, arms wrapped around my love.   I held on tight, and the wind was sharp against my helmet...the stars just beginning to come out.  We'd just spent the day on a rented motorcycle touring...first stop... a fall festival filled with laughter and memories, and then on to a  fundraiser for a man who has sacrificed so much for our freedom.  The outpouring of love that came  from the community for him totally overwhelmed me and gave my so much hope for this human race.

As we rode home that night the sensation came to me again that if I died tomorrow I would take comfort in knowing that I have lived a good life--a life worth living.   These 35 years have blessed me with amazing family, friends, and experiences that leave me feeling fulfilled.  I've had these waves of realization a lot lately, joy I would call it...JOY.  And joy was something that I thought I'd lost the months following my stem cell transplant.  What a gift to feel that again.

That night...on that bike, as I rode home embracing Michael as I trusted my life with him--those waves of joy would come.  I felt such a deep love for him.  A love so deep that it almost hurt.  And in those moments...it was like he knew what I was thinking and he would lift his arm from the handle bar and reach around and touch my leg in a loving embrace.  I could hardly believe it...and then...I could. We are connected.

So we come around to today. I get the results of my PET scan and they tell me that there are suspicious nodes lighting up.  They are in the same place as before.  We need to do a biopsy to confirm if it is cancer.

I was with my parent's for the bad news...delivered yet again by my wonderfully kind and supportive oncologist.

And so we follow up with the research again and we see that PET scans can be misleading and in many cases give alarm when alarm isn't necessary.  But then again, maybe it is real...we just don't know.

So my options are to watch and wait, or to biopsy.

When faced with these options, we sit, and we have to listen to what feels right.  And what feels right is that we don't want to go in again.  I don't want another surgery, some more drugs, a hospital stay, and all that drama.  I want to just live my life in a full way.  And not in a hospital.

So we will wait. We will scan again in 3 months and decide what to do then.

Tonight Michael and I cooked kale and radishes from our garden and warmed up a soup that Michael made for me...okra, turkey, sweet potatoes and (I say love....).  We had wine and watched Modern Family.

He, out of no where, played for me a song and we danced.  I was stunned because it was one of my favorite songs of old and there he was, just playing it for us to dance to ... take a listen and smile, and I hope you dance...


Another song that came on later and that brought back such strong memories was this song by Thievery Corporation.  It was a song that Michaelle and I performed to way back when at the 40 Watt in Athens with snakes.  That was a pivotal time in my life and it was nice to live that memory again...


And then finally, as I head to bed tonight, this song plays...a song that I treasure, a remake that give honor to its creator...


I feel amazingly calm.  Like all this work I have been doing all these months has amounted to something good.  I am learning how to really move to that part in myself that is grounded and connected.  I am a fighter and I don't plan on going anywhere soon.  I have so much more of life to live!!

So good night to you all. I love you.  And I am so happy that you are in my life.  You make my life better.  So thank you.  With total sincerity, I thank you.  Without you, (and you know who you are!!!!) I wouldn't be here today.






Sunday, July 24, 2011

Saying Goodbye

http://news.nationalgeographic.com/news/2006/06/060619-rainbow-fire.html
Well folks, I last left you with the good news that I was cancer-free.  I was now set free from the constraints of quarantine, and I was set to getting on with my life.  I have certainly taken advantage of this new found freedom.  The scare of relapse changed something in me.  Before I even heard of the news that I was indeed in remission, I had truly surrendered to the fact that this life is fleeting, and I needed to take a real quick look at what matters.   What rose to the top were two things.  Community and Divine, and the common thread that weaves those two together is LOVE. 


While I had been focusing most of my energies on the divine these past months, I found my past weeks swinging towards the community end of "that which matters."  Patty spoke it perfectly, and with comfort, when she said that my life was swinging in the pendulum.  Before my pendulum was swinging high on the divine, healing energies end, and then now, when constraints were lifted, I swung high on the community end.  My life has been completely engulfed in enjoying others and landing back on this earth...laughter, love, togetherness, work, craziness, and just living...in...the...moment.....While I take great joy in that life, I do look forward to swinging back into balance...something I haven't had for quite awhile. 


I went from 0-60 in seconds.  And I like it, but it seems like a whole lot to process.   In fact, this past two years seems like a whole lot to process.  And it is weighing heavily on this sweet soul right now.  


But the main reason that I am getting on here to write is to send my respects and deepest love to my friend Laura's family.   I met Laura within weeks after my diagnosis. She had been in this battle for awhile and always had the best attitude.  There were several times when I thought she truly was going to beat the cancer in her body, so it is hard for me to see that it has overtaken her.  Her attitude and spark were admirable and got me by several hard days.  I  have lost so many friend in the past two years, sometimes it is just too painful to bear.  But in the same breath, I have peace that she is not suffering anymore.  My tears are streaming, and sometimes I just don't know how to make sense out of this life.  In the end, I am happy that I had this time I had with Laura.  She brought lots of light to my life.  My hope is for happiness for her children and strength in what is to come.  I have a strong feeling that they already know how awesome she was, because she was an amazing mother...someone who brought light and happiness in a dark time, yet still remained true to what was real.  I will miss Laura in a way like no other--losing life to cancer hits very close to home.  But I am ever grateful for knowing her in the time that I did.  

So if I can ask one thing of you right now...please look around you and see who is in your life.  Take a real good look at them and remember that their smile, their love, their words, their way....their actions are what you remember and what you love.  And that is what matters.  So make it good, because you never know when it will be taken away from you.  

Loving you all.  Deeply.  

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 mass...so 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

Saturday, May 28, 2011

Checking In


Hi all!  I just wanted to spend a moment to check in here with you all.  I know that when I go silent for awhile you start to worry, so thank you for your worries and thoughts.  But the good news is I am doing just fine! 

We are back in the waiting game however (PET scan in two weeks!), and we all know what that means.  This time I feel better equipped to deal with it as I have been spending most of my time working on ways to deal with it, such as qigong practice, meditation practice, walking, and seeing energy healers.  

So I am feeling more solid going into this next PET scan and there are times that I truly believe and feel that I am cancer-free, and that melts away all the worry.  These thoughts of believing I am cancer-free are very new to me as I have never been able to truly go there through this whole journey--through what I think? fear? the fact that I wasn't? my spiritual practice wasn't as strong?  But I do have tastes of this feeling and it feels great, and solid.  So I am going to sit with that loveliness when it comes, and when fear sets in, which it does, I am going just keep going.  

So PET scan is on Monday, June 13th.  That will be day 101 +.  I will also have blood work and another bone marrow biopsy (yuck!).  The Cook family is coming to visit the weekend before, so I am thrilled to have that distraction, let alone a weekend filled with laughter and love.  

Once I get clean PET results, which I will!, I will go back to work!  I will also be able to eat raw veggies again, and go shopping for myself in PUBLIC!!   So we are on the countdown now to a more normal life.  Just a little over two weeks folks!  And to put it in perspective, I've been in quarantine since Feburary 1st.  That is 4 months!  And I've been on this phase of the Healing Journey since the beginning of December.  So we are all ready for some normalcy :)  I never really knew until this experience how much I enjoy/need human interaction.  

In the meantime, I will be thinking so strongly with my heart and soul of my dear friends who are really struggling with their own journey.  My heart breaks when I think of all the friends I've lost, and I know the story isn't over.  We live and we die, yet the dying part can be so painful for those left here living. 

So let's all enjoy each moment and love as much as possible because we all never know when we will take our last breath.  

Love you!

Thursday, May 5, 2011

The Butterfly


Okay, here we go.  I am sitting down to write this blog post.  I know it has been forever since I've updated and I've been wondering why it has been so difficult for me to get here and tell you how things are going.  And, I guess what it comes down to is that I am still trying to figure that out for myself, so how can I tell you?  I think people, when they ask me how I am doing, are really wondering how's my energy?  how's my nausea? etc.  And I can answer all those questions, but what is really going on with me is so multi-faceted that I find lack of words to truly explain it (and I wonder how many people really care to hear it).  There is the surface layer which encompasses the physical well-being, there is the mental/emotional layer that is still processing what I just went through--good and bad, there is the intellectual layer that has spent hours pouring over scientific literature trying to make sense of my disease, treatment and recovery, there is the social layer with me dabbling back into my circles and wondering how I can relate back to my friends when our lives have taken such different paths, and then there is the spiritual layer that has deeply seated into my psyche yet yearns for more answers and experiences.   Now add to that the mixed bag of emotions that comes with the upcoming PET/CT scan, bone marrow biopsy and lab tests that marks my 100 days post transplant mark (38 days from now).  Excitement for the 100 day restrictions to be lifted and life getting back to more normalcy, nervousness for the results.... SO---lot's going on in this ole noggin.  And outside of the noggin for that matter...(I am trying to get out of there as much as possible!!!)

Yesterday was my 2 month anniversary of my "rebirth."  I spent it outside most of the day, in the sunshine, with the breeze blowing through my head scarf :p.  I read a lot, laughed, enjoyed the company of my parents and got to people watch.  I am not allowed in public, but I did sit outside in a public park at a coffee shop.  I, for all intents and purposes, can say that I am doing pretty well.  That is the down and dirty.  But this whole experience has left a deep impact on me and it is going to take years, if not my lifetime to sift through the pages.  I am changed, am changing, and am also the same ole Evie.  My eyebrows are even starting to grow back!

Gosh, it's crazy....I have SO much to say, I am tearing up just writing this and the fullness of content I could be relating to you.  But I just don't have it in me right now to share.  I hope I do capture these feelings, at least for me.  Maybe by writing it will help me sift it out.  But for now I think I'll just leave you with some photos of me at different points in the journey.  At the onset I wanted to take a picture of me every week to mark progress, but in the trenches, I really had no care in the world to do anything but survive each day.  So here's what I got....
This is the morning of discharge after 8 days in the hospital.  My mouth sores had healed by then, but you can see my mouth is still a bit swollen.  I look grey and pasty.  But, it just a few short minutes after this photo was taken I ate a bowl of cheerios...the first solid food I had in 8 days.  
This is the same morning, I turned around to get a picture with the rising sun on my face.  I wanted you to see the IV pole that at one point had something running into all three of my catheter lines.  That was a noisy sucker, but kept me alive.  Those drugs that were pumped into me cost $48,000 over the 8 days. 
This is me on the day I got my catheter removed.  In retrospect I am surprised I was smiling as I had just been through an incredibly painful procedure that was supposed to "not hurt at all."  I was given no drugs, and there were complications with getting the catheter out.  But, like so many times in these past two years, I was saved by the kindness of strangers.  The nurse that was assisting let me squeeze the heck out of his hand and he had a large belly that was pressed up against my shaking body that oddly felt comforting.  
This is me on the land, and boy can I tell you how fast my recovery moves when I am out there? This is halfway up the mountain that I've hiked now several times since transplant.  It is invigorating and makes me feel alive.  That earth is healing.  
Mom took this of me.  I was really in the middle of fixing my hat, but I love this picture because it reminds me of how I feel when I am doing qigong--like I am washing bliss energy from the earth and the heavens all through my body as white light shines down upon me.  
Happy happy happy.  Me on the land, resting during a 4.5 hour hike!!
In Love
One weekend when we were up in the mountains, we laid a blanket down by the waterfall and just soaked in the beauty of it all.  This was the view I looked up at for almost an hour.  It was a lovely day.  







Monday, April 4, 2011

Day +30

30 days.  It is amazing how so much yet so little can happen in 30 days.  I guess it is all in how you look at it.

These 30 days have taught me that I must learn patience or else I suffer.  These 30 days have taught me that I must learn to live in the moment and not worry for the future or else I suffer.  These 30 days have taught me that I need to give up control over my recovery or else I suffer.  These 30 days have taught me that I can cry and get angry and depressed and it is okay, and it is only when I resist,  I suffer.

These 30 days have also taught me that I can find joy that transcends the physical body if I just listen.  These 30 days have taught me that I am strong despite my second guessing.  These 30 days have taught me abundant and unconditional love.  These 30 days have taught me that my soul is fueled by mother nature and by the connections I have with those around me.   These 30 days have taught me joy in simple things, which brings intense gratitude.

These 30 days have taught me that life is hard, but there is always someone else it is harder for, so count my blessings.  These 30 days have also taught me that despite everything I and my family have had to go through I sometimes feel like the luckiest person alive.

.....and then, sometimes within the blink of an eye, I find myself cycling back to having to learn those first lesson's again.....

This was taken on New Years Day 2011.  Michael and I had a ceremony on the land under the grand Hemlock tree to set intentions for the new year and to ask to let go of what no longer serves us.  It was a special day and I call on it often for strength


---------

I know I've been silent here.  I've also been silent on e-mail's and I apologize.

Like I said in my first sentence, seems like so much, yet so little has happened this past month.  On the so much end of things, I am doing so well at the bone marrow clinic, that I get my catheter taken out on Thursday (the three-pronged port they surgically put in my chest that has kept me from having a proper bath in 2 months...).  Next Wednesday, the 13th I have my discharge appointment from the bone marrow clinic and will go back to being followed by my regular oncologist!!  Which means I can drive again (even though I can't go anywhere in public), and I won't have to be babysat 24/7!!  I am being discharged 10 days earlier than expected, so we are thrilled about this.  I am still not allowed to be in public places until 100 days post transplant (June).  uugh...

Because of my progress, I haven't had to go into the clinic the past two weekends so we headed up to the mountains to get healing of the best kind there.  Relatives visited both weekends and I felt the most alive I've felt in two months while there.  I hiked the mountains, and even though it tired me out, I did it and it gave me hope for my body.

Other victories...I am eating better now, even though my taste buds are still making most things taste either bland, or a hint of the food flavor laced with vinegar, or absolutely disgusting.  I am taking my supplements which I am hoping will help in the recovery process.

I am napping less (really not at all), and generally feel my energy level slowly inching back. I am walking every day.   Nausea is improving, yet still ever present.  I feel like once I can get this under wraps my motivation for doing anything will get better.  I never realized how debilitating nausea was.

Now for the slow part of this past 30 days.  Well, it really can all be summed up into one thought...I am ready to be healed.  I am ready to rejoin the world, feel healthy, get on with my life.  I am ready to be scanned again and hear the doctor say you are in remission.  And the fact is, I won't get my wish right away.  I have to wait.  I have to go through these next months in seclusion and heal.  It takes time.  It takes time.  It takes time.  But I am hoping that with each minute I'll get a little better so that soon my brain will ask me for books to read, and my soul will crave meditation and qi gong and I will remember what it feels like to tap into the energy of the heartbeat of the universe, and my creativity will blossom and I will do all these things I have in my head to do that are merely being held captive by my fatigue, poor attention and laziness.  I welcome dreams of healing retreats and helping others.  The chemo crystals just need to cracked and be set free.  The good news is, there is movement, and that is the best I can hope for right now, right?

Okay, and so as long as I am sharing all this....I've also come to realize that I am living in a totally selfish world right now.  Because of my seclusion and the intensity of my treatment and my caregiving, everything revolves around me, and with that realization I almost got sick to my stomach.  All of our conversations surround how I feel, what is next, what are my counts, who will watch me, what do I need,  etc. etc. etc....Even this blog perpetuates it.  I am stuck in an Eve world and am too fatigued to get out of my head and out into the world (even from seclusion).   That was a big awakening and I am hoping these coming weeks will give me strength and mental focus to shift the course of this ship.  I think that is why I have enjoyed the small amount of visitors I have had, and the weekends with relatives at the cabin.  I get to get out of my world.

Well, that's what I have for you today.  Happy day 30!  I am happy to be alive.  And I have a lot of life left in this ole gal.   It is a beautiful spring day today, and our neighborhood is bursting with color.  All the windows are open and I am sitting here with my sweetie.  This moment is a good one.   Here's hoping you all a good moment...this one, and the next, and the next...

Monday, March 21, 2011

It's Springtime!

Brian Cole made this for me!! It is called "Stem Cell"  Notice the jail cell he made for the stems.  Brilliant!!!  

We made it through the winter folks!  I remembered thinking way back in early December when I started this whole process that I was grateful that I'd be going through this during the winter, and how wonderful it was that I would be coming out of it in the Spring.  Spring is a time of rebirth and growth.  It makes me happy.  And that is just the kind of medicine I need right now.   I need to remember though that Spring means growth...it doesn't mean grown.

Mom has been keeping a journal on her calendar of everything we've gone through since starting this journey at the bone marrow clinic in January.  She read it to me today as I was lying on the couch completely exhausted and wondering if this was ever going to end.  After she finished reading off every day for the past two months I thought, WOW, we have been through SO MUCH.  It is really unbelievable.    She's even been noting things like if I've walked for the day, or if I've gotten blood products, or even if I've done a happy dance, or worn a bra (finally put one on on day 8 at the hospital...we saw it as progress....), or felt an interest in playing words with friends.  (She is probably going to write down that I wrote a blog post today, because I haven't felt like doing this in a long time).

So, let's start with the good news.  I am out of the hospital and my mouth sores are all healed.  Hallelujah!!  I haven't been on pain meds since last Friday.  My labs look better than they have looked in a couple of months!!! My absolute neutrophils, a sign of how well my body is engrafting the stem cells, look great, within normal range.  All of my red blood cell markers are normal...meaning I am not anemic...something I have been since starting ICE back in December!!!  My white blood cells are hanging in there....waivering between normal and just barely low.  Platelets are normal and growing in number everyday.  My liver and kidney function are normal.  The clinic has decreased my IV fluid to one bag instead of two, meaning 3-hours less in this clinic everyday.  The best news is that we hear I might start going to every other day starting as early as this Friday!!!

So we are making good improvements.

I need to keep reminding myself of all of these improvements when I start to get down about the things that aren't moving as quickly as I'd like.  Namely I have no energy.  Zip, zero, nada, none.  I sleep all the time and when I am not sleeping I feel like doing nothing else.  I am walking a mile every single day, albeit very slowly.  I've lost 12 pounds since transplant, and while you think this big lady would be jumping for joy, I'd be much happier if it didn't leave me feeling like a shell of a person.  My face is sunken in, dark circles under my eyes, cracked, dry lips, no eyebrows or eyelashes.   I look rough, and not healthy at all.  I started to tear up when I got out of the bath the other day seeing how bad I looked, and Michael told me I looked beautiful.  And I cried and hugged him more.  And then he said you should have seen yourself last week, you look much better than you did then!  haha.

I am not eating very much.  My appetite is really poor, and nausea is ever present.  Mom and Michael are keeping me eating at least some good protein shakes with lots of nutrients supplemented in them.  Michael put a bunch of nuts in my most recent one which was a good idea to get some good protein and fat.  They are bribing me...saying if I drink my shake then they will give me a foot massage.  And that works :)  I am eating bone broths made with love by Pat and Becky whom I am forever grateful for.  Mom meticulously froze in individual portion sizes the food that the chef made for me the week of the transplant, so I am trying to get some of that food down, although solid food is a bit cumbersome and I don't have much interest in it.

So I've had a few pity parties the past couple of days about why me and blah blah blah but I cry it out and then move on.  

On a lighter note...I am typing this at the clinic and in walks my friend who I met when I first got here.  She is a very similar case to me....Hodgkins in the same areas as me, 10 ABVD, remission, and then relapse within 3 months just like me.  She is about 35 days ahead of me and today is her discharge day!! She is looking GREAT and says she feels better than she's felt in as long as she can remember.  I needed to see that encouragement today.  And, I just got my labs back from today and everything looks even better than yesterday.  WBCs, RBCs, hemoglobin, hematocrit, platelets, neutrophils, liver, kidney all within NORMAL range!!  yippie!  So we have hope.  My body will catch up....

And lastly, I never posted about my stay in the hospital, but I wanted to send a bundle of thanks to those of you who made the extra effort to make me feel loved.  To my visitors, you brightened my day, thank you Linda, Michaelle, Becky, Patty, and Karen and Brian.  To all those who e-mailed me, thank you, your letters were read and I hope you forgive me for not writing back.  To Metametrix, Amanda and Mark, Bonnie and Rob, Karen and Brian, Deana and Milburn for sweet gifts to lighten the soul.  To my women's circle for skyping me in, what a bright shining light in my day.  Rin, Chuck and Dawn, your daily check-ins and love, and skyping were so nice and made me feel so loved. I can't believe I lucked out to have such great inlaws.  And to my loving parent's who visited, cared for me, loved me, walked with me, kept me company, bathed me (mom), you are the best.  And last but certainly not least, my dear sweet husband who suffered three overnight stays with me despite the incessant beeping of the pumps, the constant interruptions, and the hourly trips to the bathroom, you are my light, my love.  You worked all day, and stayed with me every night.  You have proved time and time again you are in this with me for the long haul and I sometimes feel like I am the luckiest person on the planet that I found you to walk through life with.  I look forward to happier times when we can frolic and play and live life to the fullest.
Karen and Brian's visit :)

Tuesday, March 15, 2011

Day + 11



Hi all.  Me checking in with you all to let you know I am doing better every day.  I've been trying to get a post in for two days now and I realize I just don't have the focus I need right now to really put into the words I want to use to describe this past weeks experience because it certainly has been on heck of an experience, unlike anything I have ever lived before.  

So what I will leave you with is a mandala picture I worked on this week. It is from a book called Coloring Mandalas by Susanne Fincher and gifted to me by my dear friend Lori.  Susanne explains different archetypal stages of personal growth, and pairs them with mandalas inspired by different cultures.  The one I chose for this week was from Stage 12, Transcendent Ecstasy, in which you experience a shift from chaos to transformative wisdom, a reordering of all that was broken.  This stage is a coming together of all that went before, a time of profound joy, when you feel perfectly in step with the cosmic dance.

...yes, I like this. ... although I can't say I am basking in profound joy as the physicalities of the body are still very present.  But I do feel connected to the cosmic dance.

So I will be discharged from the hospital either tomorrow or Thursday.  And then we keep on keepin' on!!

Friday, March 11, 2011

Eve, checking in!

Misty moisty second night--view from my room.  Not bad!
Here's a big shout out thank you to mom for taking on blog responsibilities this past week.  As you can see, we've been through some stuff, so it was nice of her to keep you informed.  I appreciate all of your e-mails and concerns, and I apologize for not getting back to you sooner (or if at all yet).

So in a nutshell I have to say I am doing as well as can be expected (even better actually). We were prepared with the knowledge that I might be admitted for fevers and mucositis (mouth sores).  And indeed I was.  But what I was not prepared for was having the hospital stay feel like such a blessing.  I have a very comfortable, clean, room with a great view.  The hospital staff is very nice and are really encouraging that I will be over this hard part soon.  Because of the way I've been feeling this past week, I am intensely grateful that I can be here at the hospital and not having to figure all this out at home while still making the 6 am trekks to the clinic for the necessary IVs.
long day...time for rest!
There was a bit of a tough landing here on Tuesday night with vomiting right at shift change.  It took awhile for everyone to get things together and realize that I simply can't swallow hardly anything.  So the had to get all my meds switched over from pills to liquid (still not great) or, even better, IV.  It also took awhile to get the ideal nausea med schedule figured out, but now it is like clockwork, and my team here is awesome.  So nausea is controlled.

It then took us really about until Thursday late-morning for me to get this pain pump thing figured out on dosage, etc.  My goal is to get SOMETHING caloric down, without feeling totally drugged and out of it (I hate that feeling).  I don't mind a little bit of standing pain if it means that I am not zonkered and don't have to eat.

Now, to those nutritionists out there, please plug your ears as what I am about to say will make you cringe.  Believe me, it does me too.  My goal for today is to get 3 Ensures down the gullet.  Wednesday I managed to get one down, and yesterday I had a butterscotch pudding cup and a scoop and a half of (ORGANIC, hahahah) ice cream that Michael brought for me.  Yesterday I even finished an entire glass of water (a first since I have been here).

I know what you are thinking....we have access to all of these healthy shakes and protein powders, etc. And yes, we do, but some nutrients in these things are like pouring battery acid on open wounds.  Mom is bringing a plain protein powder shake today with a frozen banana and we'll see how that goes down (I hope it is yummy).   She's tried different versions and so far we haven't found a winner.

You can imagine my disappointment with all of this food/nutrient issue, when I've been saying from the start that this rebirth period is probably the most important time for good nutrition.  We've even hired a fantastic chef because I felt it is so important.  But what this is teaching me is that I simply have to let go of stressing about this.  Everyone tells me my mouth will be better in 2-5 more days.  And when I can settle into this routine here at the hospital without resistance to or depression or guilt about the food then my life is much happier here.

I am doing vit D dops and am also opening up capsules of vit E and rubbing it into the sores.  My mouth was regime is brings the biggest relief from the pain that last for about 10 minutes.

So I have settled in quite nicely here.  I have found the routine that works for me.  I  am comfortable, and feel well cared for.  Mom and I walked 2/3 of a mile on Wednesday, and a whole mile yesterday (after blood products!!) around the unit yesterday.  Mom also gave me a sponge bath yesterday that felt divine, and we laughed about the rebirth theme again...

Michael has been keeping me company at nights.  He spent the first two nights over night with me, but he was getting no sleep at all because of the constant interruptions, so I insisted he sleep at home last night.  I missed him, but felt the best knowing that he was getting good sleep. And I don't feel alone here.

I had to visitors yesterday...thank you!!!  It was so nice to see friendly faces :)  I am tired though and can't really talk much so the visits were short but sweet.  I appreciate the calls too, but unfortunately I can't talk very well, so it is hard for me to call you back.  But thanks thanks for the thoughts!!

So there you go, all is well.  I am not feeling depressed or anxious or upset.  I am just "being" and that is just fine for right now.  My grandmother has been doing a lot of reiki on me, and I can feel her calming presence.  It is nice.

I always have lots of things dripping into me....see Michael's bed in the background.  
view from the window this morning.

Wednesday, March 9, 2011

Admission


Mom is doing this post again today since Evie still isn't up to it herself. Seems like my Day 4 post was a little premature, since it didn't really cover the lowest point after all. After Evie and I returned to her house yesterday and I posted the entry to her blog, we decided to take her temperature (which we had been instructed to do every 4 hours). We had been told to call the clinic if her temperature exceeded 100.5 degrees. So, with the new digital thermometer in mouth, we registered 100.4, 99.6, 99.8, 100.5 and 100.7 all within the space of 5 minutes! Whatever happened to the good old mercury thermometer!! We didn't know what to do, so Evie called Michael. Within an hour or so Michael was home with a fancy electronic thermometer from the lab, which required sticking a wire in the mouth (it was designed to be used with lab instruments). As I left to go home, Evie's temperature was bordering on 100.5 consistently with the new thermometer. Shortly thereafter, it went past 100.5 and Michael called the clinic, and then Evie was admitted to the hospital. 

She has a nice room here at Northside in the special wing where all the bone marrow transplant people stay since it has specially filtered air and cleanliness standards for people with low immunity. It was a rough evening for her with some upchucking and mouth sore pain, but Michael spent the night and she made it through okay. I'm here now and she's feeling better -- her fever dropped to 100.3 but she cannot eat or drink anything, even water, without pain. They just hooked her up to some pain med pump in hopes that she will at least be able to drink and maybe eat some soft food. She has an appetite, just can't endure the pain of eating!!! So she is watching cooking shows on tv to pass the time. I have been enjoying some of the hospital food they bring her -- feel a little guilty eating in front of her, but oh well!

Speaking of food, Evie and Michael had hired a chef to make some special organic, tasty food to help rebuild Evie's strength and to nourish the caregivers (Michael and me). This very talented chef spent Monday and Tuesday preparing all sorts of amazing dishes and storing them in containers in their refrigerator for us all to eat this week. The house was fragrant with delightful smells when we returned from the clinic yesterday. But -- you guessed it! -- Evie won't be eating any of that tasty food for awhile. I brought a salad and pot roast home for Andy to eat yesterday -- boy, was he happy!

No one knows for sure what the timeline is from here, but the best guess so far is that she will be here for  maybe 3 days until her white cell counts start going up. If she is feeling better then, and if she doesn't have a fever, they'll let her out and we will resume the treks each morning to the clinic at 7 a.m. for a seven-hour stay involving blood tests and more fluids.

We count off the days. Next week she will feel much better; the week after even better, a month from today these mouth sores will be just a dream.

Tuesday, March 8, 2011

The Pits

Mom here, reporting in on Day 4 post transplant, since our dear patient isn’t up to it. She wants everyone to know she is progressing along the path of recovery, but it is without doubt “mind over matter” time. That is because Day 4 is the bottoming out of her neutrophils in preparation for the new stem cells to grow and flourish. This time is associated with a very sore mouth and throat, which makes it very painful to swallow and, along with the underlying nausea, a time of no appetite. She does her best to get her pills (anti-microbials and pain meds) down and some liquids with as many nutrients as possible, but that takes a lot of will power to do.

And she doesn’t feel like doing much of anything at all. With some good drugs that we will pick up today, she will hopefully be able to sleep through this time. Everyone tells us her mouth will be sore for another 3-5 days and then she will be feeling better and better each day. So, we are keeping a positive outlook and enduring this painful time.

The good news is that we were prepared for this. The past month we have bonded with many other patients in the clinic – some further down the path than Evie, some behind her, and we all share experiences. So the patients and the nurses and doctors keep her informed on a daily basis about what to expect, how not to worry, how it will suck for a few days but then will be over. Armed with this knowledge, she is hunkered down waiting for the upside of all this.

So, it’s the pits – literally the low point of the entire experience. It’s also like the bowl of cherry pits – the hard inner part of the cherry that isn’t tasty or edible. But these pits are seeds of new beginnings, like today, Day 4, is for Evie.

Saturday, March 5, 2011

Day +1 thoughts

So it is Saturday morning (day +1) and Michael and are are hunkered down in our corner of the bone marrow transplant clinic where we will be for six hours today getting iv fluids. We are on the 10th floor overlooking the skyline. This is where I will be everyday for the next 30 days at least.

Everything up until now has been preparation for this--ICE x 2, catheter placement, cytoxan, nupagen shots and stem cell mobilization, stem cell collection, drug education, pharmacy runs, high-dose chemo, rest day and then transplant. ...following the schedule, making it happen, eyes on the prize...

So now we are here. The day we've been waiting for and I am feeling a little out of control. There are so many unknowns that could happen for me in the coming weeks and I guess I didn't stop to worry about them until just a few minutes ago. Fortunately Michael is here and he let's me get teary and then helps me move the worry from my head.

I feel like I was in the middle of a whirlwind on a specific path and now the winds have died down and we don't have a hundred things on the schedule to check off. The calendar is blank...we play it by ear. We wait to see how my body does with the procedure.

There is a very great chance I'll be admitted to the hospital (95% of people do) for either fever or mucositis. I find fear and anxiety welling up in me surrounding this. ...okay...so I feel it. There you go.

When I get worried I find myself asking a lot of questions. I spoke to a friend today who is 30 days post transplant and she said everything that could have happened, did...fever, mucositis, bladder infection, rash. She stayed in the hospital two weeks. But she said the good thing was that the medical team didn't seem worried, they had it under control. That is what they are there for. And today she is up walking around, out of the hospital, and getting stronger everyday.

Patty is coming over today, she's been coming a lot lately and I feel our work on the energetic level will help me with all of this. And as Adya says - just allow everything to be as it is...

...and then I can exhale

...and then I think of the sweetness of yesterday. Love billowing from every angle. And I realize, everything will be okay. Even if there are bumps in the road.

WBC: 3.2
Hematocrit: 29.9
Platelets: 244
Neutrophils: 2.8
Mucositis: 1 on scale of 10
Temp: 98.7

So here are my thoughts this drizzly Atlanta morn

Friday, March 4, 2011

Rebirth

Just a quick note to let you know that all went well today.  All my sweet little stem cells went in without any complication, and we were out of the hospital and home by 1:30 where we dined on delicious homemade spinach pie and brown rice from my dear dad. Thanks for all of the love you sent today.  It was a good day.  Now time for sleep.

Thursday, March 3, 2011

The time is almost here!

Dr. Hartle sent this to me yesterday titled "Stem Cell Art"  Such beauty, it brings tears to my eyes.  

Not much in me to give a great big post, but I wanted to pop in to say I am doing well and we are going along right on schedule for transplant tomorrow.  High-dose chemo went without a hitch, and we all celebrated yesterday with the thought that, universe willing, it will be my last chemotherapy I will ever have to do.

I appreciate so much the outpouring of love I am getting from you all--words cannot describe my gratitude.  Your love comes in so many forms, and I cherish each and every last one of them, from texts, to e-mails, to facebook comments, to phone calls, to re-birthday presents, to feeding us, to meditations, and most importantly daily thoughts, positive energies and prayers for my full recovery.

The high-dose chemotherapy is now in my body and it is working its magic.  We asked it to be here, we welcomed it in to seek out and destroy the errant cancer cells that have found a warm home these past years.  The chemotherapy is also working to eradicate my bone marrow so as there is plenty of room for these beautiful, healthy 4.5 million stem cells to move right in tomorrow and develop into strong and healthy blood cells that will bring me back to a full and vibrant life I fully expect to achieve.

This has certainly been a journey of the mind, body and the spirit.  I have grown exponentially through all of these trials, and have been blown open by the power of love, the power of giving, and our connection to the heartbeat of the universe.

So with that, a big big I LOVE YOU to all you out there reading.

p.s.  everyone says the hardest days are the ones directly after the transplant, so if I am MIA, know that I am here, just recovering.

Monday, February 28, 2011

Life is a Cosmic Joke


These are the words of my very wise grandmother.  We giggle about them often when life throws us curve balls.  Well let me explain to you how we got to laughing this day.  (I haven't posted in awhile, so I am picking up where I left off in my previous post.)

I left you, sleepless, but determined to get some more stem cells.  I had collected 0.7 million and I needed at least 2M for the transplant, and ideally 5M.  I had done energy work with Patty and Mary and taken a very expensive shot to help make this happen.  I was very hopeful.

So mom picks me up and we head to the hospital for another round with the machine.  My bones had stopped hurting (had only really hurt the first morning of my collection).  I get hooked up and cozy for the 4 hour event when in walks the doctor.  He looks at my chart and mentions something under his breath to the nurse, and then left.  So I start asking questions! I've learned it is not uncommon for Hodgkins patients to take 2-3 days to get all the stem cells we need because of all the chemo we've been through.  But I didn't realize that some fail to mobilize the first time around, and in fact this could be a prognostic factor in overall survival rate.

I got it out of the nurse that the doctor saw my progress and said that if I didn't get as much or more today then we will postpone the collection, give my body a break and resume again in 7 days where I would start the twice daily dose of shots again.  Which means at least 12-14 more days ...  my... face... went... pale.  The very thought of postponing this any further was utterly unsettling.    Mom had gone to the bathroom during my interrogation, and when she walked back to my chair she saw how I'd lost my color, my sparkle.  And so I told her what I learned...and I saw the pain jolt through her body too.  And we looked at each other, held each others hands and just kept telling ourselves that the path unfolds as it should...it has been this way so far, why stop now?

So I had one more hour of collection and then we went home.  As I was packing up my belongings, I honed in on a quote on the curtain around my chair..."be gentle with yourself"  aaaahhh, yes, be gentle. be gentle. be gentle. be gentle. be gentle. be gentle with yourself.

At home we had 3 hours to wait until we heard the count from the nurse.  It was a LONG three hours.  I hadn't slept the night before, but I couldn't settle enough to sleep.  I was feeling the yuck from all of these drugs. I had trouble concentrating on things and I was trying not to stress, but was a nervous little wreck, and then release, and the nervous wreck...the release...a cycle.

I got out my Mandala coloring book and colored, and that was about what my brain could handle at the moment.  Bright beautiful colors to calm the soul.  And then the mailman came and delivered a book a dear friend sent to me.  It was a comedy and mom I and read the first chapter aloud together.  I was laughing!! It was a very welcome distraction and perfect timing.

...and then back to waiting....it was an even longer wait than the day before, and in my past experience the longer I've had to wait for news the worse it was--usually because the doctors had to talk amongst themselves as what to do next....so you can see where my brain was going with each passing minute.

The phone finally rings, I pick up on the first ring, and immediately I can tell by the "Eve?"  that it good news.  Christine, the awesome nurse who I had for collection called to say that not only did I get at least 0.7M, I got 3.8 M totaling a whopping 4.5 MILLION stem cells!!!

WHAT a roller coaster ride that day turned out to be.  I went from deep worry to incredible ecstasy within the space of a couple of a couple of words exchanged.  GOOD news feels SO GOOD TO HEAR!!!  I immediately began crying, and laughing, and thanking her, and my bones, and it was a big mush of emotions---that had to get it together just enough to hear the final drug instructions from the nurse for the weekend.

So I hung up the phone, mom and I cheered, high-fived, and I totally broke down crying, a deep sobbing cry from the depths of my soul.  Carthasis.  I had to move that energy.  And I did, and mom so lovingly, tenderly held the space for me to do it.  It was a very sweet moment.  And then tears turned to laughter--a deep laughter, as we channeled in my dear grandmother hearing her say  "Life is a Cosmic Joke!!!" Here we were...if we had never known about the possibility of postponement we wouldn't have endured those several hours of torture waiting for the results.  But if I didn't know about that, I would never had felt as good as I felt at that moment.  I was high, happier than I had been in awhile.  So which would I choose if I had to do it again....?  Not sure if I could choose anyway....

4.5 million stemmies baby!! Means we can do the transplant as scheduled, I should recover faster since I have more cells to start with, and a good mobilization bodes well for a successful transplant.

Now...lets just get through this high-dose chemo.....

Friday, February 18, 2011

week in review


It is 4 AM and I am wide awake...so what better a time to write a post!

I really need to update everyday as so many little gems show themselves each day and I never seem to capture them if I wait.   But I do want to do a recap of the week to keep the stem-cell process journaled, and also to give you an update as to where we are in the process.  It is late, and I am drugged, so please forgive the disjointedness.... :)

Sunday--platelets

Monday--day off!  Valentines Day! Mom delivered groceries from Whole Foods!  She is amazing, have I mentioned that before?  I am learning how to ask for what I need, as being home-bound, and car-forbidden makes you dependent.  I spent the day mostly on the couch. Michael cooked dinner (with delicious homemade bread from Pat!) and bought me beautiful flowers, and came to bed with me at 8:30 when I simply couldn't keep my eyes open any longer.  He IS love.  And has given up so much for me.  I hope to spoil him to death one day soon.

Tuesday--blood work revealed severe anemia, which was no surprise after a 12-hour nights sleep and I still didn't want to get out of bed...So I got my first red blood cell transfusion, also without a hitch.  I also met a new friend...a hodgkins patient who's story mirrors mine in a lot of ways.  She is 18 days post-transplant and doing better each day.  It was so nice to connect with her, and see someone on the other side of this.  Mom also got to meet her mother, and they could share experiences there too.

Blood-work also revealed that my stem cells were no where near being ready for harvest.  This was a bit of a disappointment, but I was relieved when the nurses said that Hodgkins patients took longer to mobilize because of all the chemo we've done.  So they told us to come back on Thursday to check again, and realistically, it might not even be until Friday or Saturday that we can collect.

Wednesday--feeling BETTER, finally!! Amazing what a few red blood cells can do!  I called into grand rounds at work, and that was a nice distraction.  I am SO so so grateful for those who donated blood.  I have donated regularly through out my adult life, but I realize now, it wasn't often enough.  And, I never donated platelets.  I knew blood donation was important, that's why I did it, but I would have done it more often if I had really known the impact.  It is too bad that it takes a personal experience like this to realize such an important thing.  I can never give blood again, but I hope to raise awareness to others.  I am a believer!!  What an easy way to save lives.

I was thinking a lot about my dear sister-in-law, Dawn that day.  She is such a fighter and was in chemo that day! She is almost done with her several month struggle against triple-negative breast cancer.  She is on the home stretch and I am SO proud of her for her strength, her positivity, her courage, and the beautiful heart in her.  She is awesome and I am sending her so much love.  I can't wait until the two of us are romping around in the woods together, laughing, and putting these chemo memories behind us.

Thursday--WE have Stem Cells Baby!!!  And I could tell my bones were working hard for them!  I hadn't had bone pain until I jumped up out of bed Thursday morning and almost fell flat on my face from the pain in my pelvis!!  So those little guys are working, and I thank you.

The collection went without a hitch, it wasn't painful at all.  Mom donated platelets in the chair right across from me!  We joke about how fun our ladies day out was!! haha.  She was such a trooper!! It was her first blood donation, and she did it!!

A couple of hours later the lab called and said that we've only collected 0.7 million, with the goal being 2-5 million cells.  Because I was under 1 million on the first collection I have to take another drug called Mozabil.  Side effects include....nausea, diarrhea, and insomnia, and yep folks, I got 'em.  But, if it means I will get enough stem cells for transplant to save my life, well so be it. I am grateful!!  It was a bit of a wild goose chase to track down this drug in Atlanta rush-hour traffic, but I've got a stellar healthcare team that knew I needed this tonight.  Amazing people.  I realized later that part of the reason it was so hard to come by is that it is $6500 per SHOT!!!  And I might have to have 2 more!  yikes!

Patty and Mary came over for the second time this week.  Our work is feeling extremely sacred and powerful, and I LOVE those women dearly.

So that puts us to now...I did sleep for a few hours tonight.  I am waking up every hour with hot flashes, this has been going on for over a month now, so I am getting used to that.  But I guess the Mozabil put me over the line with the sleep disturbances...

It is 5 AM now.  In an hour I wake Michael up to give me a double dose of the nupagen, and mom will be here at 7 to pick me up to take me to the clinic.  Wish us luck for more stemmies!!

Good night and much love!!
Evie

Monday, February 14, 2011

Our Oregon Trip!


These pictures are from our trip we took the end of January, just before the beginning of this bone marrow transplant process that started February 3rd.    The write-up below is from the photo book we've put together chronicling our journey.

Pre Lockdown Trip
Oregon bound, what??  Yep folks, that’s how we roll! J We’ve been expecting a quarantine period ever since we decided to go forward with the high-dose chemotherapy and stem-cell transplant, but it wasn’t until two weeks before it all started that we found out that quarantine would be for 3 months—way longer than we expected!! So what have these two travel-hungry, nature-seeking, adventure-loving people decided to do to make the most out of the time left?  We go for a trip!! 

The question was, where to go?  Eve’s passport had expired, so that ruled out any international travel.  It was snowy in much of the country, which just sounded too cold. We’d been to California recently, so that left us with either the dry New Mexico desert or the lush, green Oregon.    We checked our sky miles and found round trip tickets to Portland OR for the cheapest possible miles!  And SO we booked it!   Oh yeah, and then got permission to go and HAVE FUN from Eve’s oncologist, her bone marrow transplant specialist, and her naturopathic physician. 

Eve immediately contacted her dear friend Sarah Lopath who she met in Oregon 15 years ago and “Lopes” proved to be the best travel agent we could have hoped for!  A week later we were on the plane!  Eve, donned her mask….and we set out with determination to eek out every bit of fun to be had. 

…as you will see we were successful!

Sunday, February 13, 2011

Platelets (with updates!)

I am here at the doctor today to check my counts.  They were low on Friday.  And we just found out they are even lower today.  I am trying not to worry...it is amazing where my brain goes.  I wish there was someone here I could talk to and ask if this is normal even though I am taking nupagen?  My bones aren't hurting like everyone said they would, and my counts are still low...white blood cells, 0.3 where normal is 4.8-10.8.  But it is known that the chemo I got  last Friday causes the lowest counts 7-10 days after...which is now...so it is probably all fine.  I just never noticed before because we weren't monitoring my blood everyday.

But they say I need platelets today.  So now we are waiting for Atlanta Blood Services to drop off platelets for transfusion.  I am scared.  I have never received blood products before. But my platelets are 17,000 when normal is 150,000.

The patient next to me just got platelets and now he is feeling some reaction and the nurses are paying him attention.  I can't take Benedryl and they don't have an alternative.  If I have a reaction they are going to have to shoot me with hydrocortisone.

But, Michael is here with me.  He helps keep me grounded.  We are working on our photo book from our trip to Oregon.  That makes me happy.

Please send your love and most importantly your strength today.  I know you will, you always do.

p.s  things you learn around here...take your hat off and let your ears breathe before they take your temperature from your ear-drum.  If not, they freak out when the thermometer reads 99.4!  I almost got antibiotics again...but I let my ears breathe and it came down to 97.9.  ... sheesh...

UPDATE:
I have successfully received my first bag of donor platelets!  I am so very grateful for whoever was kind enough to spend the time to donate these.  The kindness of strangers is pretty amazing.   Secondly, I did not have a reaction!!  And I was spared having to get benedryl OR hydrocortisone!  And thirdly, I want to thank Skype for getting me connected with my dear friend Dawn who called in just as the platelets were just beginning to go in.  She was there for me with love and support and strength...I asked and she gave.  And it has been like that since day one.  Dawn has always always been there on my rough days, just when I need her most.  Thank you Dawn.  And finally, my women's circle Skyped me in!!!!  AHHH!!  How cool is that??  They put my little computer face head in the circle and I got to be there for check-in :)  All while sitting here in the infusion center with platelets bringing me life.  I just love those women and are so grateful for them!

So we are done.  Time to pack up the computer and enjoy the rest of this beautiful sunny day!

Love you all!

UPDATE 2:
On our way out of the infusion center I ran into a nurse practitioner.  Now was my chance to ask about the low blood counts and if it was normal.  She calmed my fears and said yes, don't worry.  It takes time for the cells to come back after chemo even with the nupagen.  So okay...exhale...and I did, and Michael and I came home, made a healthy and tasty lunch and went out for a long walk to enjoy this sunny 65 degree weather.  :)