Friday, December 24, 2010

Sleep sweet sleep....

Ah well, I couldn't have expected round two of ICE to go as smoothly as round one.  I mean, you start off healthy, so it is easier to combat the yucky side effects, but round two, your defenses are compromised.  For me so far it has been steroid-induced insomnia, LIKE NO SLEEP on Wednesday night.  And for those of you who know me, know that Eve on no sleep makes for one unhappy girl.  I have never once pulled an all nighter for school, I've always had to plan ahead enough to allow a little sleep, and I've been through A LOT of school!  I've always been the first one to poop out on late nights.  I love my sleep.  Period.  Like 8 or 9 hours of it.  It makes me a happy girl, easy to be around, positive, playful, and able to cope with the stresses in life (I might have a few right now).  So no sleep Wednesday night delivered a sobbing weepy girl to day two of chemo.  Not to mention I felt like I felt all the symptoms of chemo sickness much worse (probably because of the no sleep).  But, the nurses there were awesome and supportive and working quickly to get me some help for tonight as I was getting depressed that I had two more days of steroids to take!! 

Now, I am not a prescription med pill girl  (which if funny based on all the drugs I am putting in my body now--I mean healing elixirs!!!).  But frankly, I have gotten exhausted worrying about herbal/nutrient interactions with these chemo drugs.  I am doing this chemo and I want it to work.  So, I was given the choice to take Ambien.  And I said YES!  I need my sleep or else I am not going to make it (sobbing)!  Michael was worried about this because we've heard of all kinds of weird stories about Ambien and sleep walking.  And I am hooked up to this pump were I can't go anywhere besides a two-foot radius without it pulling on my port.  We teased and said he could hand-cuff me to the bed...With this chemo drug I also have to make sure I get up and pee every couple of hours because it can ruin my bladder.  I didn't want to just sleep through that. 

So it was a tough decision to finally make, but 9:30 rolled around and I felt the steroid jitters and started to freak.  So we cut the little pill in half and set Michael's alarm for couple hour increments to remind me to pee and compromised with that.  AND IT WORKED!!!!  I slept for almost 10 hours!! Like a baby!  I am just so happy!!!  Maybe you other fellow sleep-lovers will know the joy I am feeling right now. I do know many of you live in the mind set of :"sleep, who needs that?" (including my husband).

Anyway, kind of a simple check in and probably TMI.  But, I've got energy to put something down on paper this morning.  So yay!

I hope everyone is having a wonderful holiday season!!  I am looking forward to spending mine with family and friends.

Many blessings and love to you all!

Sunday, December 19, 2010

Reporting In



Here's me coming out of the woodwork to let you all know that I am doing really well.  Chemo does make me less focused, which is probably what is to blame for not sitting down long enough to write a blog post.  But I do want to let you all know I survived round one of ICE pretty well less some nausea, couch surfing for 6 days, bone pain, space-cadetedness, and....loss of hair....again....I actually have less hair now than I did after 10 treatments of ABVD, but okay, I can deal.  What is funny is that the night before my hair started coming out in clumps it was long enough to actually put in a pony tail!!!  A small one, granted, but a pony tail no less!! I bounced around the house all night showing Michael my nubby, and then the next morning in the shower...clumps...so I cried.  And then tightened up my bootstraps and didn't leave the shower until I made artwork on the wall with my hair (gross I know, but it felt like a way to deal with it).  I have pictures but it might be in poor taste to show...

So with all of the bad, the good has made up for it in spades, like triple spades. I want to give words to these experiences, but they have been so deeply meaningful that my words just take away from the depth. Maybe one day I can learn to articulate the beauty in life.  But for now I just want to give gratitude to my Shakti family, to my meditations, to the processing, to the movement, to your amazing amazing, unfaltering love and support, to the lovely winter solstice celebration with the women's circle and the warming of our home, and last but certainly not least, my parent's and the magical land to which we love and honor and explore. 

I go in on Wednesday for another ICE treatment--three days worth.  And then celebration of this special time with family and friends. So happy holidays to you all! I hope we all get to see and enjoy this lunar eclipse on the solstice on a full moon!! Seems like a once in a lifetime event, but who knows...maybe it happens more often than I think.  Either way, sending love and gratitude to you!

Thursday, December 2, 2010

the shift

Warning:  this post is disjointed with a poor, and rambling  flow...but I wanted to put down on paper my thoughts these past days even though I am under the influence of drugs...my intentions are good.
 
Well folks, so far I am surprising the hell out of myself (in a good way!).  And my only explanation is that I've earned it! haha (I've had help!)  I really think that following the path that I have has made me ready for this next phase.  I couldn't have done this any other way, I realize that now...all those worries about decisions, etc...well, all those decisions got me here, and here is me feeling really like I can BEAT this.

I am sitting in a space of being okay with what is next.  I am hooked up to a pump that injects ifosfomide in my veins every 2 seconds for 24 hours, and that is just one of the three drugs I've been given so far.  And I didn't cry once today!! This is HUGE!  I am seeing these drugs as healing elixirs instead of poison, which I thought of before.

I slept fine Tuesday night before starting chemo again...that never happened during the 10 treatments I had last year.  I cried at every one of those treatments except the last one.  The chemo sickness started on day one of chemo and it lasted a week.  I am on day 2 now and still feel pretty okay.

Instead of crying I even had a fun day being silly with Michael at the infusion center and then eating the MOST delicious bowl of Pho (everything tastes really good on steroids). And then mom went with me to the acupuncturist and we shopped for christmas trees!  And then Krishan called and it was so nice to connect with him. 

I also woke up this morning thinking that this stem cell transplant is going to give me a second chance at making my immune system right.  I wasn't born unhealthy...something happened between when those stem cells reproduced, and I got sick with serious allergies, and then cancer.

So I've toughened up, or softened up...depending on how you look at it. The energy has shifted in my body.  And I dream of land and retreat and health.  That wouldn't have happened if we had taken any other path.

I wanted to tell you about my spirit animal experience I had on Tuesday, but then I got on Patty's blog and she does such a very good job of telling the story plus giving great bits of inspiration...so please go here and read.  The snake... Patty knows how to use words so eloquently, I just love reading her posts.  

So I am doing pretty good.  Now lets just hope that this isn't the steroids talking ;p  But, when they wear off, I also believe I can deal with what comes. I don't expect all sunshine...but like Michael pointed out this weekend at the beach, the sunsets aren't as brilliant without the clouds. 

Tuesday, November 30, 2010

chemo take two

First of all, thanks to everyone who has taken the time to send messages and leave voicemails (I haven't been the best at responding).  Your words give me strength and make me feel like I am on this journey not just with my immediate family, but with an army of folks who support me and love me, and that alone makes the world a better place and leaves me in a better place to conquer this thing.

I went to work today thinking I'd go and help tie up things, but it was hard.  It is hard to go and realize that I can't be all and do all.  Fortunately I work with a bunch of amazing people who can step up and take charge and pick up my slack. They are supportive and encouraging, and know I will be back to put my best foot forward (something that has been lacking for a long while).

So I start chemo tomorrow.  ICE therapy.  It is 3 days of chemo, I have a pump installed for a continuous infusion.  Then I go back again in 3 weeks for more.  I'll be sick again for Michael's birthday which makes me very sad (he is so sweet though and doesn't seem to care).  Fortunately Lia has offered to share her birthday celebration with Michael in a couple of weeks--go karts and video games!! sounds perfect :).  And Michaelle has offered to come over on Friday and bring cake and celebrate Michael even though I'll be sick on the couch.  (sounds like last year!)  I feel so lucky to have such amazing friends to pick up where I lack. 

We hope that after two infusions of ICE that my PET will show no signs of disease.  This is when we start the conditioning phase of the SCT.  They will give me Nupagen to mobilize my bone marrow to produce stem cells.  Then it will take three days to harvest my stem cells.  Once that is done I'll have the atomic bomb dropped on me to kill every last ornery cancer cell in my body.  I'll be in quarantine for the next month as they replace the stem cells and rebuild my immune system.  This will leave me cancer free and ready to rebuild my new cancer-free life.

Patty today found an amazing story of the battle and recovery and the mind/body connection.  I've been drawn to qigong for awhile, and my acupuncturist supports it wholly.  I think there is something to this...http://www.bobellal.com/articles/standing-post-meditation/

So I look forward to my meditation group tonight with Mary and Patty and I am going into this next round with hope and positivity and I will visualize these drugs working to put down this disease in my body.

Next round...here we go...I am ready!






.

Wednesday, November 24, 2010

news

I am typing this post after watching beautiful sunset with my family over the marsh at the Aerie.  After the initial shock and emotional release, I am feeling amazingly calm for hearing bad news for the third time.   I asked Michael if I am handling this better because bad news gets easier to hear.  And he says well, yes, that can be, or it can be that you are stronger than you have ever been (Becky fiercly confirmed this to me today too), and we know that we can keep fighting and move forward.   This is our path now, and it is what it is.

Dr. Hamrick delivered the bad news with most kind spirit.  He said that the tumor has returned in my mediastinum (chest).  But, it hasn't spread to other organs, and he says we are in the same place as we were this summer before the biopsy.  I said, well, we gave it our best shot.  He responded without any hint of ego, but just pure encouragement and faith with saying you did what you needed to do, and we will keep fighting to beat this.   I won't forget his kindness. He e-mailed me the PET results and said in the e-mail enjoy my Thankgiving holiday and we will begin to fight again next week.  I read Love, Medicine and Miracles by Bernie Seigal this fall and think I lucked out finding a doctor who seems to fall into this special set of doctors who understand and embrace the doctor patient relationship.

So I am here with my family and I am going to enjoy this weekend for what it is...a celebration for the good in life.  Love, family, nature, laughter, and relaxation in a beautiful place.  ... a reminder for all that we are grateful for.

Part of me feels solid about going forward with this harsh treatment because I know we tried our best with the less toxic treatments.  They didn't work, but at least I won't be years out from a stem cell transplant, suffering from the side effects, and wondering what would have happened if I just took those three months to see if other things would work.  

This is the path we've chosen.  And I am surprisingly okay with it.  We held true to our beliefs, and still do.   There will still be fears, and sadness, and pain, but it won't last forever.  And thank goodness I have spent these past months really working on the mental/emotional/spiritual side of my life because that will help make this whole thing easier.

So next week I start ICE chemotherapy in preparation for and high-dose chemotherapy and autologous stem cell transplant.  This will heal me once and for all.  And, we do have the best medical care available for recovery from these treatments. 

Onward and upward.  My deepest love to  you all.  I wish you a very happy Thanksgiving and you better believe I will be thinking of you with gratitude in my heart.

...and p.s..  I am signing off, and what song comes over satellite radio while my family is buzzing around making a delicious dinner?  Shower the People you Love with Love by James Taylor.  It brings tears to my sappy soul...

Monday, November 22, 2010

the Spectrum

Today = fear and courage, strength and weakness, love and hate, joy and sadness, grief and relief, anger and release, gratitude and resentment, tears and laughter, doctor's offices and my feet on the earth.  I am totally exhausted.  Time for the couch, and a good book.  I'm checkin' out.

The outpouring of love from those of you who sent messages to me today was amazing.  I know we've been fighting this thing for awhile so thanks for staying with me on this journey.

I'll let you know when I hear something!

Sunday, November 21, 2010

Thanks-giving

Well, on the eve of my next PET scan I am finding myself in a place of incredible gratitude.  I have cried several times this week...ranging all the way from fear and anger to being touched by incredible love and beauty.  It is such an interesting thing...to experience the swing of the pendulum.  Senses are heightened right now and I guess I am just holding on for the ride.  What I have found is that I can influence this swing of the pendulum...I can catch air on the love and gratitude side of things...hang tight for awhile, and bask in that loveliness.  And then fear steps back in, but I don't linger for long.

On the eve of this national holiday, Thanksgiving, I have many thanks to give.  I thank my dear friends for their friendship.  Lori, I loved loved loved our conversation this morning and look forward to the day when I can embrace you and we can laugh and play together and enjoy this gift of life.  To M in Fl, your dedication and support...I have no way to repay you.  It touches me deeply.  And to Mary and Patty who let me cry and beat pillows, I am grateful for the love and energy you bring to me and our home. 

Yesterday morning I was reminded yet again how deeply I love this soul mate of mine (not that that is hard...), and how much he loves me.  I've been having trouble with my port access this week, and we've had to jerry-rig the IV to get the fluids in fast enough.  I ended up having to do an IV on Saturday morning (long story...) but, because of this problem with the port Michael had to put the IV pole on the coffee table, and I had to lie of the floor to use gravity to our advantage.  Instead of him leaving me and doing normal Saturday morning things he plopped right down next to me on the floor (even though his butt went numb--I used up all the pillows) and we made the most of an annoying time.  We spent a couple of hours pouring over our wedding photos trying once again to make an album (progress was put on hold when our Mac Book pro was stolen in the break-in...not to mention the year delay with all the other stuff going on...).  So we got to re-live that amazing weekend again.  And then my friend Dee posted this video of facebook that immediately  put me into tears...ain't love grand???



So with all the anxiety of the test tomorrow...which keeps liking to show itself, I am also feeling grateful for all that I have despite what the results will tell me.  After the scan, which Augustin is taking me too, I get to spend time with my amazing grandmother for her 84th birthday, and then enjoy the holiday with my parents, my brothers, Michael's parents and Margie and Ray.  Life is good.  We are surrounded in love and good people.

Friday, November 12, 2010

Soul food


Ahhhh....just had a lovely day with mom at the Piedmont Cancer Wellness Center.  We started off with an amazing Qi Gong class, had lunch overlooking the city, and then let our creative juices flow at the art of Mandala making class.  My dear friend Karen also came after a grueling morning of chemo...bless her.  After we created our Mandalas, the teacher read to us about the 12 different stages of "the round" and which style mandala fit with each.   Mine fit the 8th stage, the Functioning Ego:
  • ability to work comfortably in group settings, organizations, or alone, whichever is needed to accomplish your goals
  • inspiration becomes reality through great effort, and takes on a form that is seen and appreciated by others
  • you are actively engaged toward personal goals, living life on life’s terms, using the imagination to the fullest to create new and wondrous things
  • on the spiritual level, healing takes place through finding ways of sharing wisdom gently and respectfully with others, in ways they can understand
The description seems so great for the timing.  And, my picture looks somewhat similar to the one I picked for my last post.  I must be channeling that wavelength these days.

Mom's was the stage of Transcendent  Ecstasy!  That's a good one, eh?  I wished I had taken a picture of her's to post here.  I'll try to get my hands on it.  But here is the description for hers:

"A change of consciousness – a feeling of fulfilment, of awareness of our relationship to a higher power, a sensation of rising from the earth in exultant joy. Images more often than not have an uplifting quality about them and contain only the one single image (although sometimes there tends to be a focal point implied above or near the top of the image). The images are powerful, yet playful. The task at this stage is to accept the gift of grace and to plant the seed for a new cycle to begin."
 
So another day of soul-food.  I just can't seem to get enough lately!  And these experiences, each one, gives us greater inspiration of how we look at moving forward.  There is such a rich source of good people in Atlanta to welcome to the retreat to teach, lead courses, and heal people.  We certainly are fortunate!

Happy Friday everyone, I hope you have a great weekend!  I know mine is off to a good start.  Now to get ready to have my brothers over for dinner tonight.  Oh, how I love those boys and feel incredibly grateful for them. 



    Tuesday, November 9, 2010

    PET Scan


    Well folks, the time is almost here that we've been waiting for.  I finally bit the bullet and contacted my oncologist so that he can order the PET scan.  I scheduled it for the Monday, November 22nd.  I asked my doctor if he was going to be going on vacation that week which would delay him being able to give me the results, and he said no, other than Thanksgiving.  So I hope to have the results by Tuesday or Wednesday.  And then either way, I'll be surrounded by family for celebration, or support during the holiday. 

    Overall I am doing pretty well.  I am working hard on keeping my energies pointed in a positive direction, and grounding myself in a way that releases the fear.  It doesn't work all the time, but I have learned some wonderful tools to help with this.  Meditation, energy work, acupuncture, plenty of sleep...I have found that this time the fear is sitting in my brain instead of my heart, and doesn't hurt as badly. 

    Scheduling the PET was very stressful and anxiety provoking, but now that I've done it, I feel a bit more sturdy.   It doesn't hurt that Sunday I spent all day working on the spirit with my women's circle and a breathwork class, and continued right into Monday with an another amazing energy meditation and therapy appointment with Becky and meditation with Patty and Mary in the evening.  And this morning I started the day off with acupuncture with the intention of balance.  So I am trying to stay ahead of this emotion beast! haha. I am off for a warm bath after I get done typing this before crawling into bed with my sweetie. 

    My friend Lara just sent this link to me, it is so neat, I find myself mesmerized...I especially love the first song, the Gayatri mantra.  Moving Mandalas 

    p.s.  I got some test results back today and they look normal!!  (now, granted, this doesn't mean there is no cancer, but abnormal means cancer....)  And, my CRP, a marker of inflammation that I have been monitoring, is lower than it has been in YEARS!!   Guess that helps justify the 87 pills I take everyday! 

    Here's hoping you all are doing well.  My love and gratitude to you all!!

    Tuesday, November 2, 2010

    In the lap of Jesus


    Sunday afternoon a sweet friend of mine lost her battle against cancer--and boy did she put up a good fight. She is survived by her three teenage children and her deeply devoted husband, and the most loving and supportive parents and sisters. 

    I've typed and erased several things here, as I guess I am just struggling about what to say--I keep tearing up with memories and stories.  Bottom line is Holly was a vibrant, loving and passionate person who's faith was unwavering.  I am deeply saddened by the loss for her family, but know that with that faith she is now home with her maker. 

    I know we all have our crosses to bear, but I guess in times like this I always wonder why bad things can happen to such good people.  Pointless to ask these questions I guess. 

    In the meantime I'll just be grateful that our paths crossed and I got to experience yet one more person on this earth who is good, and loving. 

    Sunday I went walking the land with my family and there was a part that was full of Holly bushes.  I remember thinking of her so strongly, and I realized later that that was right around the time when she was making her transition. 

    Cancer takes a lot from you.  So here is my blessing tonight...I hope for peace of mind, love and courage for all of those I know out there right now struggling with this disease, which is too damn many of you if you ask me!  And I also hope that despite what it has taken away from you, you get something back in return.  I know I did with Holly's friendship. 

    Much love and many blessings to you all. 

    Monday, October 25, 2010

    time for an update??


    It has been forever, and I apologize for being so absent in blog land.  You are so sweet to be checking in on me and seeing how I am doing despite my silence here.

    Since I've left you I've visited the depths of fear and depression that comes from the unknown and the decision, but I have also recovered from that stronger than I have ever been before.  I'll always remember the distinct moment when the fear left my body, and I'll be forever grateful to Becky  for that.  That fear was replaced with a tangible lair of safety in my heart, full of white light and love, and safety and warmth.  I can still conjure it up now as I sit here.

    We've been working hard towards healing with IV therapy, supplements, chiropractics, meditation and I've added in the mix a new doctor who is absolutely amazing.  Not only is he managing all my inlets for health on the integrative medicine realm, he is also an incredible acupuncturist and Chinese Medicine doctor.  I see him twice a week and leave there with waves of joy coursing through my body.

    I've since celebrated my one year anniversary with my love and that weekend was a brilliant highlight to the wonderful reminder that is life and love.  We celebrated with a deep connection and set intentions for this new year together.  We even enjoyed cake (well he mostly...) from our wedding day, and bought for each other a crystal signing bowl in the chord C sharp for the root chakra.

    Shortly after that we realized the passing of our one year anniversary of my first chemotherapy.  I remember so vividly that day...we rode over together in silence, scared.  But we made it through that day, and 10 others like it.  And I survived.  And I will again.

    We've got the excitement of land on our fingertips.  Mom and Dad, oooh, how I feel so incredibly lucky, are in the works to buy this amazing...utterly amazing...piece of property in North Georgia.  This is a place of healing, you can feel it within in a minute of stepping foot on the property.  I am excited for this, and day dream of the dream becoming reality...

    So that is where we are now.  Feeling grateful.  Feeling at peace with where I am right now.  ...and hoping I don't visit the dark side again.  But if I do I know I have the tools to crawl out again.  I am less than a month away from the next PET scan (still haven't scheduled it) but I am bracing myself for whatever it tells me.  If I am cancer free, than YES!!!!  Joyous celebration!! But if I am not, well, it is okay, I can fight some more and still win.

    So there you have it!  An update!!  I feel like I have left SO much out but that is what being silent for almost two months will get you. hahah.

    Oh, and I want to leave you with a  video that touches me to my soul.  We are all connected through the dance of life.  We are all human, and experience joy, pain, love, and the dance...

    Click on this link:
    Where the Hell is Matt



    And here are the lyrics:
    Stream of Life
    by Rabindranath Tagore
    The same stream of life that runs through my veins night and day
    runs through the world and dances in rhythmic measures.
    It is the same life that shoots in joy through the dust of the earth
    in numberless blades of grass
    and breaks into tumultuous waves of leaves and flowers.
    It is the same life that is rocked in the ocean-cradle of birth
    and of death, in ebb and in flow.
    I feel my limbs are made glorious by the touch of this world of life.
    And my pride is from the life-throb of ages dancing in my blood this moment.

    Friday, September 3, 2010

    the letter

    Here is what I wrote to Dr. Hamrick this morning:

    Dear Dr. Hamrick,

    It isn't without great thought, and research that we've decided to take the path of less harm to begin with. I feel like if we give this a try for a little bit longer just to see what comes of it, then we will know. We can always move forward with the harsher treatment, but we can't go back. I hope you understand.


    If I start experiencing any symptoms then I will certainly pay attention and step up to more tried and true treatments.


    I ask a favor, will you order a PET scan for me? I'd like to do one end of October, beginning of November.


    I am forever grateful for your patience and your guidance and support during this tough time.


    All the best,
    Eve Bralley

    That is about all I have in me to say right now other than we are all very positive and hopeful.  We have done extensive research and feel like we made this decision not out of emotion, but out of understanding and knowledge, and most importantly, out of love and the soul's speak.  The people who want me to live more than anyone else in the world support and encourage this decision and we feel lucky that we have this option open to us, where many don't have it available. 

    Everyone always asks what they can do to help me, well I have an answer for you now.  Help lift us up with positivity and encouragement.  I don't want to hear negativity and I don't want to hear your opinions unless they support our decision.  No one is more informed about this than my little medical team. 

    I'd like you to read this post by Patty, it explains a bit more:  http://patriciabralley.blogspot.com/2010/08/sailing-off-edge.html

    Onward and upwards!  We are headed to visit Michael's parents later this afternoon, then a quick overnight camp and caving adventure in Chattanooga.  I am going to pack Curtis with me on Tuesday after my IV and head to Kiawah to spend a couple of days with my parent's relaxing and rejuvenating in the magic of that place.   Move into the Waaaah! (right Becky!)  Decision making took a lot out of me, and telling my doctor what our decision was was also very tough.  I need the magic now more than ever so I am looking forward to these next days of rejuvenation. 

    So, as Michael says, our decison is made! Let's batten down the hatches and make the most of it!

    Thursday, August 26, 2010

    My birthday



    Well I have to say, my birthday ended up being just perfect.  It didn't start that way, but thankfully I have such love in my life that you all were determined to make it end that way.  So I thank you.

    I started the day with a follow-up surgeon's appointment.  I thought this would be quick, I'd be in and out because I seem to be healing very well from the surgery.  Two hours of waiting in the waiting room later...the surgeon finally comes in.  He immediately starts in on how he's talked to my oncologist and he strongly recommends I start chemo right away.  Time is of the essence.  I wasn't prepared for this conversation and felt sabotaged and was there with no one to defend myself but me.  So that left me very rattled.

    And again, these dang hormones...but I can't complain, I certainly brought it on myself.  So I was fragile yesterday and very teary.  Fortunately I got to talk for a nice long time with Rin, momma2, and that was nice.  She makes me smile even though she is also going through a really tough time.

    When I got to work Michael, my mom and my dad huddled, and we had some good conversations.  And Michael, oh my goodness, all he has to do is lay his hand on me and I immediately feel better.  His presence is so calming for me and I am so grateful for his strength.

    I left work early for a birthday colonic appointment, and as much as I hate those, it seemed to also calm me a bit more.  I guess it feels good to feel cleansed.

    Anyway, I got home just in time to get dolled up for our big night!!!! Michael had made reservations for Woodfire Grill, an AMAZING restaurant.  We've only been there one other time...for Michael's birthday.  The chef was second place winner for Top Chef fall of 2009.  His theme is based on the use of local foods and sustainability.  We ordered the 7-course chef's tasting....and...oh....my....goodness...I don't think I've ever had such yummy food.  It was the most romantic night we've had in a very long time and I had a smile on my face from ear to ear the entire night.

    So as I was going to bed last night I was happy.  This is a new year, full of possibilities.  Full of hope.

    I thank all of you for the love and sweet messages and cards and presents!!  I love you!!  You are certainly special to me.

    Monday, August 23, 2010

    just breathe...

    I am having a hard time coming up with titles for my posts lately.  They all revolve around decisions or updates or waiting...This one is no different...haha...maybe a title will come to me by the time I finish the post.

    I am recovering noticeably each day from they surgery.  Every time I show people the pictures they say, wow! that came out of you?  And I say, yes! through my rib cage...no wonder it hurts so bad! haha.  But, I am able to lie down and sit up by myself now and decreased my pain meds from a gazillion a day down to only one on Saturday morning, one Saturday night and one Sunday morning.  I am now on Advil...watch out world!  I don't know how Michael feels about it because apparently I kicked him HARD twice last night...the opiates I guess gave me more restful sleep anyway.  But I am grateful to be noticing improvements.

    I had a nice weekend and actually LEFT MY HOUSE for a little bit.  Can you believe it??  It was nice to see friends and hang out with Augman, and have a really nice low-key family birthday party at Margie and Ray's on Sunday.  (Don't tell but I even had wine AND cake!)  yeah yeah, it is my birthday and I am going to celebrate!

    This morning, after a rough one of choking on my vitamins and dealing with the 15 minute ordeal it takes to get them unstuck, Michael and I made it to Dr. Hamrick's office.  He had the results of the biopsy and ...duh duh duuunnnnn.......sure enough, it is Hodgkins Lymphoma.  What has changed is the morphology of the disease.  It is now nodular sclerosing, where before it was mixed cellularity, and the CD 68+ macrophages have GONE DOWN!!!!  WhoooooooPeeeeee!!!  I am now a category II risk instead of a III on a scale of I-III.

    So where does that leave us?  Well, Dr. Hamrick is ready to get started ASAP.  Like this week.  He explained to me the ICE regimen.  Three days hooked up to a chemo pump.  We'd only have to do 2 rounds now instead of 3 because there is no evidence of tumor in my body as the surgeon removed all that was lighting up on the PET.  Then off to high-dose chemo and stem cell transplant.

    I started freaking a little on the inside in that office.  He was so confident, ready to go, let's do it.  And I was like, WAIT, we don't have to rush now do we??

    So I started to tell him what was on my mind, and of course I started crying, so Michael comes to the rescue yet again and explains everything else.  i.e.  we might want to stick with alternative for awhile just to see where that will get us...etc.

    Dr. Hamrick was as nice as I could hope for.  He is going to call the bone marrow specialist guy to ask him to speak with me again to talk about all of the side effects again.  I need to hear some good stuff after stem cell transplant, because my latest thing I heard was someone had permanent hearing loss!

    In the end Dr. Hamrick said he would support any decision we make, but he strongly suggests we take his advice.

    .....do...you....know...how...hard...it...is..to go against his advice?

    I have been numb most of today.  Well, aside from the 30 minute crying jag I had when I got to Progressive for my Vitamin C IV.   Thank goodness for the love there.  The IV room is a safe space for experiencing life in all of its joys and sorrows.  A dear friend of mine who has had to face the same decisions as I have and is still in a great struggle came to my side today and prayed for me.  It was so amazingly beautiful and she gave me the gift of peace.  I will always remember it.

    So here I sit.  Again with having to make decisions and feeling well, kinda just pissed.  Angry.  Upset that I have to deal with this shit.

    And I think it is finally sinking in the realization of ALL I HAVE GONE THROUGH in these past two weeks.  Fertility visits to the doctor every day, egg harvest, PET scan, major surgery, and now a hundred other appointments and discussions I have to have regarding what to do next.  I was just doing before, and now that it is done...well, time to decompress.

    Well, not much time, because we've got to get a plan together!  Patty's already on the collection phase of all the articles we've read and discussed put together in one place highlighting the reasons that support the use of alternatives.  I have an e-mail in to Dr. Drisko to her advice, and of course I am going to talk to the bone marrow doctor.

    And of course, all this emotional upheaval I am feeling right now might be stemming from the fact that all those little 17 eggs that were growing and producing estrogen are now getting me ready to bleed a very big bleed.  I am feeling PMS'y so I might just come back strong after all this and laugh at how hormones can mess with your mind.

    I think I am going to go back to Piedmont Cancer Center tomorrow. It is a place that makes me happy and supported.

    Wednesday is my birthday and despite my surgeon appointment and a colonic Michael has something up his sleeve for me.  I am excited.   At least I won't be in surgery like I was last year!  See, there is always an upside.

    I want to thank everyone for your e-mails and advice.  I also want to apologize from the bottom of my heart that I haven't been able to keep up with responding to you.  Know that your love is received in the greatest sense of gratitude.

    P.S.  I went to look for a photo and breathe came to my mind...here is what I found, and just breathe is what the title has to be!

    Thursday, August 19, 2010

    good news comes in threes!

    We get three pieces of good news in one week!  I think this is some sort of record!  But the surgery went well and the surgeon was able to remove the entire tumor!  Now, he says this doesn't mean that I am cured as Hodgkins is a systemic disease, but at least we don't have to debulk a bulky tumor!  And, of course, I keep calling it a tumor, but there is a small chance that it isn't even Hodgkins, so we will know in a week when the biopsy results come back.

    Yesterday was quite the day.  Mom picked me up at 10 am and we headed to Northside Hospital.  They took me back to the pre-op room and I sat there by myself for about 30 minutes before the nurse came in.  I was scared and started to tear up but then realized this was just one more opportunity for practicing relaxation and controlling my brain.  So I got in my little hospital gown and sat on the bed cross-legged and meditated.  When the nurse finally came in my BP was 120/72!!!  I was so proud of myself.  So she hooked me up to IV fluids and my mom was able to come in.

    Mom was SOOo so fantastic yesterday.  She was a trooper and in for the long haul.  Initially we were to be there by 10:30, surgery from 12:30-3:00,  and recovery for 2 hours.  But the surgeon came in and said that the OR that we were to use had an emergency case in it and my surgery would be delayed by 3 hours!!  So mom hung tight with me, while dad exchanged text messages with us.  It was as nice of a time as you can expect for something like that.

    When the surgeon was talking to me I asked him why he can't just remove the whole thing, and he said, well, he will try, but the tumor is located in such a dangerous area for cutting--snuggled up to my heart, next to my lung, and right by the superior vena cava.  He said I had a better chance because I haven't had radiation, which can cause scar tissue.

    So I went into surgery and woke up sometime later with him showing me pictures of the ENTIRE tumor!!  I was so happy, despite my anesthesia related crying fits.  Once I find a scanner I'll scan the shots and post so you can see.  The tumor looks like a turtle! He showed the before shot and he had to cut through all of this connective tissue that the tumor was pulling on my lung.  Kinda scary.

    Anyway, the surgery lasted longer than we thought, and my poor mother was out in the waiting room getting pretty nervous.  But thankfully the surgeon came out and said everything was fine.  Michael joined her at that point and they met me in the recovery room.

    I had a real tough time with nausea, but passed all my other tests like walking by myself, peeing and drinking water.  So they decided that I didn't need to stay overnight and discharged us around 10 pm.  My nausea finally abated when I got home and dug out some chemo anti-nausea meds.  Thank goodness because I was in such pain that I need to take a pain pill, but I couldn't get anything down until the nausea went away.

    Last night was a crazy one, and I thank the stars above for that incredible man of mine.  I am in such pain that I can't sit up or lie down by myself.  So he is right there by my side to help lift me.  I woke him up at 3 in the morning when it was time for another pain pill, but he had to make me some food for me to take it with.  So there we were, laughing (well, me trying not to laugh because it hurt) that we were sitting in bed while I sipped mushroom broth and ate saltine crackers while he rubbed my aching back in the middle of the night. I am so lucky to have him.

    This morning he stayed with me until about 11, and mom and dad will be here about 1.  So here I had a few minutes to write to you all and give an update.   I am a little loopy, but grateful for a bit of relief from the pain.  I have a call into the doctor to just be sure it is the normal kind of pain and nothing to worry about.  (you know me, I like to worry).

    I can't tell you how blown-away I am by all of your facebook comments and love you gave me yesterday.  It definitely put a happy light to my day.

    And we celebrate again for the successful removal of whatever mass likes to light up so brightly on my PET scan!!!

    Love to you all, now time for rest.
    Evie

    Tuesday, August 17, 2010

    Good News!!


    Dr. Hamrick, bless his soul, called me first thing this morning and said "Ms. Bralley, I have good news...your tumor has not spread, it basically looks the same as it did 2 months ago. "

    It isn't gone, but I'll take it!!!!  Neither of my dreams came true, haha, we found middle ground.  We've halted the progression of this thing in a safe way.  And this gives us such encouragement for going forward!!

    So back to decision making, but for today I am just going to celebrate!!!!

    I am shaking all over with joy.

    Now I am sending all that happy love to my new sister Dawn and hoping she hears good news today.

    Monday, August 16, 2010

    another wait


    I can't tell you how loved you all have made me feel these past days (and always!!!!).  Your e-mails, and your cards, your phone calls, and your presence in my life help during this crazy time.  I know I've said it before, but we truly are on a roller coaster ride.

    The ups:  I got the call on Sunday morning reporting on the egg harvest.  I had 13 eggs retrieved, 9 were mature, and 5 fertilized.  So, as mom says, we've got five little blueprints :)  I like that.  I heard the news when I was surrounded by some of my favorite people in the world.  And of course I broke down crying.  I was crying because I was happy for the successful completion of this ordeal, I was crying because it was one stressful ordeal and it is over, I was crying because it meant that we now have to face the reality of what is next, and I was crying because I got to hug that sweet lover of mine and feel his love so deeply.  Michaelle, Lia and Claire were there to hold space and Michaelle raced to my side and let me cry all over her too, I just love those girls.   Today the doctor's office called and said that we've had another successful fertilization after one more day, so that makes 6 total.  So our options are open.

    The downs:  Well, the PET scan was this morning, and there is no escaping the stress from that.  And now we wait again.  I went to my past PET scan by myself and realized that was a huge mistake.  Even if something like that seems like no big deal (it isn't painful at all) it IS a big deal and I realized I needed support.  And so my mom was right there with me by my side, no questions asked.  She picked me up, we rode together, and then she waited for me in the lobby for 2.5 hours.  So it is done.  And we wait.  I do have the disk that has the scan on it..and I am tempted to look at it, but I am also terrified to.  So we'll see.  ...

    I had my pre-registration appointment for the biospy surgery on Wednesday and then mom came with me to Progressive for the C IV.  So it has been a full day of medical again.  But that is life right now.

    So I wanted to get on here and let you all know what has gone on.  I'll let you know tomorrow when I hear something!

    My most gigantic love to you all!!

    Saturday, August 14, 2010

    The Count

    13 eggs harvested and Michael's swimmers look good! We'll know by tomorrow how many embryos survived. All went well and was uneventful just how we like it :)

    Thursday, August 12, 2010

    Dreams

    Psyches Dream by Josephine Wall

    Last night I went to bed and dreamed that we had the PET scan and the results showed I was cancer free.  We were all celebrating and happy, it was a beautiful dream!  I woke up and thought, wow!  I hope that is a good premonition!  And then dozed off again...where my dreams took me to the PET scan again.  I was in the room while the radiologist was reading the results and we saw the PET light up all over my body, and even in my brain. And it was really scary.  So I went on to therapy, but was surrounded by all these other people my age going through the same therapy and so it didn't seem as scary. ...And then I woke up.

    So who knows what dreams are supposed to mean...

    Wednesday, August 11, 2010

    The Medical



    Two posts in one night you say??  What can I say, I guess I am on a roll.  But, as interested as I am in the mind, I know many of you want to know the medical update as well.

    As of today I have 13 follicles ripened and ready for the picking!  They plan to take the eggs on Saturday morning and we should know how many embryos we will have by Monday.  The whole thing is still kind of strange to me..the idea of making frozen babies.  But hey, there is a lot that has gone on this year that seems strange to me.   Regardless of all of that, this experience has been quite an amazing one.  First of all, it has bought us time to really do the due diligence needed to feel good about our decisions going forward. 

    Secondly, it has allowed me to meet the most wonderful group of medical professionals that I have come in contact with yet.  The crew at Reproductive Biology Associates is amazing.  Everyone there from my doctor to the nurses to the ultrasound ladies to the billing specialists are nothing but heart.  I am blown away by this and visiting them everyday these past two weeks has become something I look forward to.  It is like walking into an office full of smiles, encouragement and love each morning.  I have had to talk to the nurse on the phone so many times I can't even count and she never got irritated with me!  

    And finally, it has shown me yet again how much Michael loves me.  I was ready to hang up my hat and get started with treatment several times, and it was he that encouraged me to keep going as he knew this was something that we needed to do to make these next months more bearable.  He is steadfast in his love and support for me and I tear up every time I think of how good I have it.  (although it was like looking at a deer in headlights when I told him yesterday that we had 13 follicles developing!  haha, I could tell the poor boy had flashes of Cheaper by the Dozen movies running through his head).  P.S.  13 follicles developing doesn't mean that many eggs.  They hope to get 6 or 7 out of these to use for embryos. 
    Okay, so that is the egg story.  

    The rest of the story....

    Well, we are in a holding pattern.  These two months have sent us on a crazy journey of discovery.  I mentioned in a previous post that my biopsy results came back with putting me in the worst category of Hodgkins patients based on the CD68 + cells.  Initially we thought this was a good thing to know so as to avoid stem cell transplant.  We were going to go to MD Anderson because they offer alternatives and clinical trials.  Which they do.  BUT, only for people who have relapsed after high-dose chemotherapy and stem cell transplant.  BOMB number...how many is this by now?   I am amazed at how receptive these high-up doctors are to answering my e-mails.  The ones at MD Anderson basically said stem cell is the best thing for me to do.  

    And this is after I heard from two other doctors as much.  

    So....

    Where we are sitting right now:  I have been doing high-dose Vitamin C IVs now, 5 per week, for several weeks.  I have been taking 5-6 grams of curcumin a day, 2 grams of resveratrol, low-dose naltrexone, and hyperbaric chamber among some other smaller things.  I feel like we are giving the alternative medicine the good ole college try.  And I truly hope that the cancer is gone when we go to look for it on Monday.  Or at least shrunk..or even not grown at all.  This would be really really really good news.  

    But, I am being a truthful optimist, as dad would say.  I am preparing myself for the result that I don't want to hear.  And if we do hear that, I have found a peace with accepting high-dose chemotherapy and stem cell transplant.  I know this was what we were set off to do from the beginning, but it feels really different now.  Like I am deciding not from a place of fear, but a place of knowledge and understanding.  

    So, we wait.  I liked Patty Bralley's post today.  We are waiting.  Good or bad, it will be nice to know what is next.  

    The schedule:
    Saturday, egg retrieval
    Monday, PET scan
    Wednesday, lymphnode biopsy (just to make sure we know what we are dealing with!)
    And then...our path will unfold.  


    The power of the mind

    http://chancetoheal.com/tag/guided-meditation/

    So, where to begin.  Well, I'd first like to say that I am feeling like I am in a good place finally.  It certainly has been one heck of a roller coaster ride, and continues to be.  But something has shifted in me these past two months that is beyond words.

    On June 15th, when I heard the results of my PET scan, my world fell to pieces around me.   And since then we have been through the ringer with ups and downs, each down taking an immeasurable hit. I have had a very difficult time working, and have become consumed with the "what next".   It became quite clear to me, clearer than ever before, that if I don't find some way to cope with stress and bad news that I wasn't going to make it.  And so I set out to find a way to cope because not making it is not an option.

    In these past two months I have become very good at my second job...managing my life--which really has become my first job.  I've already mentioned the strain of the many doctor's appointments and all that is associated with that, and the research, and the second opinions, and the decisions, not to mention all of the treatments and procedures I've done.   In addition to all of that I have sought out help in the mental/emotional/spiritual realm.  And it is here that I have discovered tools that will help me the rest of my life.  It is here that I have become empowered because I have now seen how I can change the state of my mind.

    ...and I did it last week...and it rocked my world...long story but I got bad news (again) and totally flipped out.  But I got a grip, and turned the mind around.  And it ended up being okay after all.

    I still have a lot to learn, but I am happy to see the progress so far.

    What I have learned...I don't have to be afraid of my emotions.  I have always heard that a positive attitude will heal you.  And so every time I got sad, or scared, or angry or cried, I would immediately begin to judge myself for not being strong enough to power through with positivity.  But thanks to those of you out there helping me with this, you've let me realize that I can feel all of these emotions and it is okay.  It is okay to feel sad, angry, scared and it is okay to cry.  And it is interesting, once I am given permission, the feelings arise and flow through and out of me and I feel better.  I am not fighting them anymore, and in a way, it gives them less power.  So here I thought that the exceptional patient (I am reading Love, Medicine and Miracles by Bernie Seigel, excellent book!) lives in positivity, but really I was understanding it wrong.  In order to reach a state of positivity, you must be truthful to yourself and allow thoughts to come in and out.  If you don't let them flow through and out, then they get stuck and you continue to feel those emotions.  Becky, I can't thank you enough for this gift.

    I am also learning the power of meditation.  Truly this time.  Intellectually I have always understood the benefits, but I've never really experienced them.  I've given up to boredom, or frustration of the noise in the head.  But this time it is working as an excellent tool to help me calm down, maybe because I've never been so wound up, haha.  I've been doing some group meditations too, and wow, the energy bonus of that is amazing.

    I've been practicing different kinds of meditation too.  Quiet, with a mantra (taught to me by my parents).  Heart-focused meditation with breathwork (taught to me by one of the therapists I am seeing), guided meditation, and energy meditation allowing for any kind of movement or sound that feels like escaping.  Now, this last form of meditation is particularly scary to me, it always has been.  But I am finally getting it.  I am tapping into that soul energy that needs to move and it is powerful.  I even screamed at the top of my lungs several times in one assisted meditation.  And as rattled as it made me, it needed to happen, and I became more fluid, and more grounded.

    Michael and I have been doing energy work together and visualizing my tumor gone.  I woke up one morning convinced that Michael had healed me.  Whether or not this is true, it is such a sweet connection for the two of us.  No harm can come from love shared full of good intention, right?

    So I am seeing therapists, I am doing group work, I am working on my own and with Michael, and I have sought out support groups. Piedmont Hospital has an excellent program for cancer patients, survivors, and friends and family.  I even applied and was accepted to attend Wind Rivers Retreat, a retreat for cancer patients.   And, the women's circle is starting up again in a couple short weeks.  I've missed those women!

    I am really working on myself here, and this is just the beginning.  In less than a week I have my followup PET scan, and I need to be ready for whatever answer it gives.  ...  so here's to taking deep breaths.

    Wednesday, July 28, 2010

    Good news!

    I found out today that my ovarian cyst has shrunk, and my estrogen has come way down!  So the doctor has given me the go ahead to start the medications!  So in two weeks'ish we should have egg harvest! 

    Tuesday, July 27, 2010

    the universe slaps us in the face...

    Well, within an hour of writing that post I heard from  the doctor who led the CD 68+ research and he replied to my question on his opinion in my case.  He of course couldn't answer me specifically without seeing me, but he said the best chance for survival is the high dose chemotherapy with stem cell transplant despite macrophage content. 

    And then, minutes later I check the mail and I got a letter from Dr. Gonzalez in NY who I'd applied for a second opinion.  He said that cure rate for standard treatment for Hodgkins was too great for him to recommend nothing but that.  So he won't see me.

    So two doctors within an hour recommend stem cell transplant.  And stem cell transplant has a probable chance of not working in my situation.  Great.

    the path

    For some reason this time around I've been much less vocal here on the blog.  I don't know the reason other than the fact that I am totally consumed every single day on thinking about myself, and my options, and my treatments, and making lists, and crossing things off lists, and making phone calls, and researching, and reading, that I don't feel like spending more time thinking about myself by writing updates.  But, a benefit from this is that my endurance for such things is dramatically improving.  I think of it like I am  training for a marathon, and reaching that point when you realize, that yes, I know I will be able to do this! (not that I've ever trained for a marathon). What's one more mile...what's one more call to an insurance company...

    Maybe another reason I am not posting is because we still don't have the path carved out for us yet.  Although as I type that I realize the absurdity in that statement...I mean, I am on the path that I am supposed to be on, as I feel it deep within my heart this time.  Just because decisions haven't been made doesn't mean that the path isn't chosen.  The path right now is inquiry, discovery, education, and listening to that place in my being that knows what is right, and not rushing into treatment out of fear. And boy do I have one hell of a team to help me with this.  Patty Bralley has proved to be my first hand woman in this detail.  Her mind for science and research, and her ability to synthesize and summarize for me is a blessing beyond measure.  Not to mention the fact that she is there for me emotionally too.  What an incredible combination. 

    I feel from the depths of my soul that I will beat this, that WE will beat this, but I see that it won't be an easy road.  In exchange for that however, I am getting the best education I can hope for--I am learning about all things cancer--acceptance of diagnosis, biology of the disease, perseverance of heart, attention to that intuitive voice inside,  love, the power of the mind, strength from others, and a fighting spirit. I am hopefully learning skills that someday might help others going through this.  Because truly, unless you've experienced it, you don't know.

    I am in a totally different place than I was 11 months ago when I learned I had cancer.  Then, it was scary as hell, but there weren't many choices to make.  ABVD cures 70% of Hodgkins patients.  And I coupled that with a healthy diet, high-dose Vitamin C IVs, supplements, and hyperbaric oxygen therapy.  The cards were stacked in my favor. So why the relapse?  Well, right now I am sitting in a place feeling like there is just more to learn in this experience. And there are a hell of a lot more decisions to make, which is an exercise of the mind, the heart and the body in itself.

    An interesting article came out in the New England Journal of Medicine in March of 2010.  And yes, this is one of those journals that traditional MD's pay attention to.  Patty armed us with this paper before our meeting with the bone marrow transplant doctor.  Basically what the researchers discussed is that the treatment of Hodgkins Lymphoma hasn't changed in over 20 years.  They have no good markers to determine how well someone will respond to treatment, so most people end up getting too much of the destructive treatment just to make sure bases are covered.  And even then, 30 % of people either never reach remission, or have early relapse (me).  These researches however have discovered something that can separate those who respond well to treatment compared to those that don't.  By measuring the amount of CD68+ macrophages in the tumor mass, they can predict response to treatment.  The more CD68+ macrophages, a statistically significant increased chance of relapse, a poorer chance that one would respond to a stem cell transplant (which is what they want me to do), and an overall poorer survival rate. 

    So we asked the bone marrow specialist to look at my lymph node biopsy that was taken in August of 2009.  It is amazing that they still have it, but they do!  And the doctor had heard of this study, so he was fortunately on board. 

    Now, arming ourselves with what these results might mean....Patty was originally afraid to share this paper with me because it talks about that percentage of people who aren't cured from this disease...But really, after reading, it seemed like a very important piece of information to know before embarking on this incredibly serious treatment regimen of chemotherapy, stem cell harvest, high-dose chemotherapy to kill bone marrow and stem cell transplant that will permanently diminish my quality of life by way of chronic fatigue, headaches, memory loss, sexual dysfunction and menopause, not to mention that I will have a 6-fold increase in my chance of getting leukemia eventually (this was what was told to me in the little booklet the stem cell doctor gave me at the appointment). 

    So the doctor ordered the test and the results came back...I am in the highest risk group, the group that has greater than 25% CD68+ macrophages in the tumor mass. 

    That bomb drops...like so many bombs I've received in the past year. 


    ...but as we have time to process, a few things come up...one, we aren't really that surprised.  In my mind it comes from logic...I mean, we did what we were supposed to do, plus some.  And it still came back. In Patty's mind, it isn't logical at all, but intuitive, and she actually feels good about the news.  As does Michael and my parent's.  GOOD.   We feel good about the news...

    It is a strange place to be sitting in.  I find out that the cancer that I have is one of the more dangerous forms of Hodgkins, one that has a poor response to the standard treatments.  Yet, I responded initially very well to ABVD.  I had gone into remission.  So there is still hope.


    It is good to find this out before heading down this path of stem cell transplant that will take my immune system and beat it to the ground. We interpret this as a NO... stem cell transplant is not the answer.  This is a major big assault on the body, and to find that I might not even respond to it makes me fiercely want to explore other options. 

    And so we come to MD Anderson Cancer Treatment Center in Texas.  They are well-known in having specialists for many different forms of cancer.  There are two for Hodgkins.  I read a transcript of an interview with one of the doctors and was impressed.  Her vision is that one day we will find the personalized treatment of this disease.  They incorporate many more therapies besides the standards that we are exposed to here.  And that interests me greatly.  So we are set up to travel to Texas to have an appointment to see what they have to say.

    This is one avenue.  We have looked into many many more.  I have reinstated high-dose Vitamin C IVs 5 times per week and my oncologist has ordered a repeat PET scan so we can see if there is any impact of these on the tumor.  Michael has been trained by a nurse to give these IVs to me at home, so I am now calling him nurse Michael :)  I have also added curcumin in gram doses into my daily regimen (something an MD Anderson oncologist is studying and finding good results in pancreatic cancer).  Diet..don't even get me started....raw or not...but we've decided not, as Chinese Medicine says Cancer is a cold disease, and you need to feed the body warming foods, not raw.

    I am seeking/researching second opinions from these clinics:
    http://www.dr-gonzalez.com/index.htm
    http://www.gaynoroncology.com/
    http://www.euro-med.us/
    http://www.mskcc.org/mskcc/html/69402.cfm
    http://www.burzynskiclinic.com/

    I am also working a lot more with energy movement.  I could write a whole post about this and have had some pretty amazing things happen since trying this.  It seems crucial to my recovery, and I will expand more on it soon.  But it is big, and important.  And too much for my energy level to verbalize right now...

    And finally, about the fertility preservation...I went in on the first day of my period to get an ultrasound and blood work for the go ahead for the two-week process.  This was on the weekend of  Transformus, the most mind-blowing event I have ever been to, but had to decline this year because of all of this--instead I am at the doctor, a hard pill to swallow.  The nurse found I had grown a 3 cm cyst that wasn't there on initial work up on my left ovary that was producing estrogen 10-fold more than what they need to see to do the procedure.  So the doctor put me on 10 more days of birth control pills to hopefully shrink the cyst.  I find out tomorrow if it has gone away. If so, we can go forward.  If not, I am abandoning the whole thing and moving on (even though I have $6,000 worth of donated fertility drugs in my refrigerator right now, thank you Lance Armstrong and EMD Serano.)

    So that is the update, in a nutshell.  It seems like a long read, but is nothing compared to what we've been living.

    My team is amazing.  Amazing.  Gifts come in so many ways.  Mom and Dad are right by our side every step of the way. We talk every single day, and their open ear mean the world.  They have been incredibly gracious in relieving the gigantic stress of money and cost of this whole thing, which is huge.  My dad showed us his fatherly love by buying and installing us a home house water filter.  Patty, like I mentioned, is right there and is fierce in her dedication and love.  Michael of course, ahhh, my sweet love, who keeps me sane, and lets me laugh, and cry, and live life.  Becky, I thank you for allowing me to scream, and Margie, your love is strong.  Rin and Chuck, you are my second parent's and I couldn't be more lucky.  My love is with you and your family as you also walk the rocky path.  And Grandma, she is just so incredible, she's been showing her strong love with Reiki and heart.  There are so many people that I need to thank over and over again.  I've received amazing medical advice, kind gifts in the mail, sweet letters, and lots of hugs.  I could never do this without all of you.  

    And this post was possible thanks to the space that was made for me because our water heater died and I had to leave work early to let the workmen in to replace it.  So thank you water heater for breaking--a post was overdue...And thank you Michael for allowing us to pay for someone to install it so I can spend more time with you, instead of you having to fix in on your own, which I know you could!

    Tuesday, July 13, 2010

    don't wear fear

    I am at home after two long days at 4 different doctor's offices.  I have a couple of hours before Patty and Mary come over for meditation, and a storm is rolling in.  I am making pickles from our gazaabs of cucumbers from our garden and am working on feeling happy and content.  And then Cat Stevens comes on over Pandora.  I've loved loved this song forever and every time it comes on I smile.  And it didn't fail me today. 

    Cat Stevens Don't be Shy

    Don't be shy just let your feelings roll on by
    Don't wear fear or nobody will know you're there
    Just lift your head, and let your feelings out instead
    And don't be shy, just let your feeling roll on by
    On by

    You know love is better than a song
    Love is where all of us belong
    So don't be shy just let your feelings roll on by
    Don't wear fear or nobody will know you're there
    You're there

    Don't be shy just let your feelings roll on by
    Don't wear fear or nobody will know you're there
    Just lift your head, and let your feelings out instead
    And don't be shy, just let your feeling roll on by
    On by, on by, on by, on by, etc.


    http://www.youtube.com/watch?v=6ycjX3rLzyE

    horoscope

    well, whether or not you believe in this stuff...reading this today sure gave me the extra boost I need right now to keep on going.  This is from Rob Brezsny's Astrology Newsletter.

    VIRGO (Aug. 23-Sept. 22): I want to see your willpower surge and throb
    and carry you to a ringing triumph in the next two weeks, Virgo. I hope to
    be cheering you on as you complete a plucky effort to overcome some
    long-standing obstacle . . . as you put the finishing touches on an epic
    struggle to defeat a seemingly intractable foe . . . as you rise up with a
    herculean flourish and put the stamp of your uniqueness on a success
    that will last a long time.

    Pretty awesome pep talk, eh?

     I've been quiet here.  Lots going on, but not feeling like writing about it.  Basically I am either at the doctor, or making doctor's appointments, or talking to insurance companies, or pharmacies, or filling out applications, or getting medical records, or second opinions, or tracking down information.  And then doing it all over again.

    Saturday, July 3, 2010

    the reality


    What a crazy roller coaster life has been lately.  My mind reels in a hundred directions, with the constant reminder that toxic thoughts will make this whole process more difficult.  So this go around I've realized that my mental health is as important as my physical health for the positive outcome that I know we will achieve.  Fortunately I am surrounded by people who can help me with this.  I feel like we are fighting a war, and we've got one hell of an army!  Everything from the scientific/medical team, to the mental/emotional team, to the health/healing team.  And I truly believe that all of this, once I reach the other side, will make me a better person... and one who will be able to help others like me one day.  Because if I have learned one thing, it is much easier if you don't have to do this alone.  And I've found support in unlikely places too...like from people I have just barely met who've opened their heart to me, and I am touched beyond belief. 

    Patty has turned me on to the teachings of Byron Katie, and as new as I am to her, the central dogma of her philosophy is that wanting our reality to be different than what it is causes pain…so just accept what is.  And strangely I get some relief from that.   With this calming, it seems I can make more rational decisions and actions as to how to merge the desire/reality path. 

    So what is the reality right now?  My last post seemed pretty definitive, but, well, what is the saying?? "A woman who doesn't change her mind doesn't have one."  Well, I guess I can't say I've changed my mind, but I've opened it up to more possibilities.  The whole process of stem cell harvest, high-dose chemo, and then stem cell transplant with quarantine sounds pretty scary.  They are gong to kill all of my bone marrow (let alone all the other damage it can do), and rely on the cells they harvest to make me whole again. I know that this has been a very successful treatment for many, and is groundbreaking and life-saving.  I am incredibly grateful for the research and science that has made this possible as it might be what saves my life.  But I've taken a step back and want to see what else I can possibly do to not have to go through this.  

    This whole fertility issue has actually bought us some time, which, upon thinking about now, is a blessing. I have these weeks to not sit idly by, but to do something, and we will see what comes!  We've decided that I am going to work on implementing a raw foods diet, increase my Vitamin C IV's to 4 times per week (Dr. Drisko has seen people who have relapsed go into remission purely from this alone), add in things like higher dose curcumin (thanks Dr. Hartle!!),  and other polyphenols that can dampen the inflammatory response. It is a bit ironic that my graduate work might be just that that helps save my life. 

    Patty found a really interesting article on Hodgkins and it shows that there are very few cancer cells in these tumors, and the cancer cells are surrounded by inflammatory cytokines and other inflammatory cells that actually fill out the tumor.  So if I can dampen the inflammatory response, I can slow the growth of the tumor!  I am going to do heavier detox with saunas and exercise with nutrient support.  And once I can get my eggs harvested (end of July) I'll head to a raw foods retreat center in Ithaca, NY.  I lived/worked there in 2002 for a summer, and know it as a place dear to my heart, and good for healing of the best kind.  
    I am going to work on the emotional aspect of all this too with meditation, counseling, and group work. I've been introduced to new healing  modalities such as NET and chiropractic work, homeopathy, and spiritual development.   I am finding this as critical as the physical health aspect. 

    I am ready to cleanse the body and mind so that it is ready for whatever life has to throw at me. 

    After these things I hope that my oncologist will give me a script for another PET scan to see if any of this has made a dent. And then we will decide what to do.   

    So there you go...that is reality for now.  Who knows if it will change, but I am not going to worry about that now...

    Happy Fourth! 

    Sunday, June 27, 2010

    The Update


    So, I am sure all of you are wondering what is next. That is the logical question. 

    I was grateful to have the weekend away in New Orleans for Amanda and Mark's wedding last weekend.  It was a perfect escape of reality.  I was surrounded by the magic of two souls in love, amazing friends, old and new, and of course, my sweet husband who I absolutely fall in love with again and again, hundreds of  times a day.  I feel like I have won the lottery finding that man for all of the love and support he gives me every second of the day. 

    So we come back to reality, and it hits hard.  Like an atom bomb.  But there are no choices in the matter, you move on, that is what happens.  Time ticks on, and you live it.

    We met with the reproductive specialist on Tuesday.  It is likely that the next treatment will put me into menopause.  It hurts to even write that, let alone accept it.  But that is that.  There is also the chance that I'll be fine, and bleed until I am in my 50s.  Life is a crap shoot.  But, with odds like they are, I wanted to meet with a doctor to give me my options. 

    We talked for an hour and a half, and the best option seems to be to freeze embryos.  As it happens though...the lab that makes these embryos from my eggs and Michael's sperm is closed two weeks a year for quality control purposes. And guess what?  The lab just happens to be closed during the two weeks I need them.  So, I could start this process tomorrow, but because of this, I have to go on two weeks of birth control to accelerate my next period.  Once I bleed again, they give me hormone shots for two weeks and can then harvest my eggs.  And then the next day I can start treatment. 

    So AGAIN with the medical decision making. This is so stressful.  Should we wait a month to start treatment again, or start treatment this week and risk the possibility of never being able to have our own children.  We haven't even decided as a couple as to whether or not we even want children.  I feel like we have to make this really serious decision in a week. 

    But, we, as a couple, have made the decision.  We are going to try for the egg harvest.  Having the eggs doesn't mean we have to decide right now as to whether or not we will have children, it just leaves our options open.  I know many people might judge me for this because it postpones my treatment, but I have to follow my  heart.  It is what I have to go on right now.  And he supports me 100%.  Our decision has come from hours of the most intense yet loving, conversation.  The kind that is pure and from the heart--on both sides.  We aren't playing around anymore, life makes you grow up fast and make some hard decisions.   

    I go in tomorrow for blood tests to make sure my ovaries are even functioning well enough to try the harvest.  If those tests come back showing poor ovarian function, the point is moot.  But if they are fine, we are going to go ahead with the process.  We feel like it will keep our options open and might make these next months of treatment less stressful.  I've talked to my oncologist about this, and he seems fine with waiting unless I start experiencing symptoms such as drenching night sweats, rapid weight loss, pain, or itching (I had this before, my body itched all over).  So far I have none of these symptoms, and he said we only detected this because of surveillance, not symptoms, so he feels more confident to wait.   I've actually been feeling really good.  I am kicking ass in boot camp, feeling great energy, and I haven't suffered from seasonal allergies, something that has plagued me for over 10 years.  It is amazing!

    An endearing part of the whole thing is that we found out is that this clinic does gratis work for cancer patients.  They only charge cost for the procedures, and Livestrong, Lance Armstrong's charity group for cancer patients in their fertile years, pays for the fertility drugs.  So something that should cost $20,000 will only cost us $8,000.  Still a lot for an indecisive couple, but worth it to us for the peace of mind--I guess you call it insurance. 

    So I have to say, this past week was insanely difficult.  I have cried from the depths of my soul.  Michael and I have just sat and held each other for many moments while I cry, or we are numb and just have each other to hold us up.  My parent's have been amazingly strong and loving.  My mom calls me several times a day which I count on, and when I am at work, they visit often to just sit with me and process things.  My dad canceled my work trip to Denver this weekend because he said I needed to be here with family on my "good weekends".  I was set to go, but that act alone set shocks of love to me.

    Michael's mom and aunt came to visit for dinner on Thursday, which was so nice to just see them and be with them.  Patty and Margie have been awesome in their love and support.  Not to mention the myriads of people who have shown their love and support in this critical time. 

    My first day back at the alternative clinic was emotional...a set back for many.  But the love was strong. The love and support I get from everyone there lifted me up. 

    And so I feel like I have journeyed to the dark side but am crawling out and seeing the light.  It just took a bit.  This weekend was amazing.  I haven't been home for a weekend in as long as I can remember, and so this weekend we barely left the house.  We spent the entire weekend at home, and loved it.  We loved just being with each other, and creating our nest.  We rode bikes, worked in the garden, made delicious healthy food, and watched silly movies that made us laugh.  We enjoyed the little things.  So thank you dad.  We needed it. 

    So there it is in a nut shell.  We wait to start treatment unless my blood tests come back tomorrow saying otherwise. 

    Mentally we are doing better.  This is summer after all, my absolute favorite time of year.  So how could life be that bad after all?  I sit here typing this on my porch, with my love by my side, and the sound of frogs and owls permeating the moist warm air that smells rich with life. 

    Friday, June 25, 2010

    Evie the Penguin


    and P.S. I forgot to mention that I now have a South African penguin named after me!  My friends Michaelle and Claire are in Africa saving the penguins, and look at this adorable one they named for me...

    Thursday, June 24, 2010

    The Color of Love

    I have to say, these past days have been the hardest I have ever lived in my entire life.  The shock of hearing I have cancer again is a hard pill to swallow--really really hard.  And the fear of what is to come is paralyzing at times. And the decisions I have to make THIS WEEK that will impact the rest of my life weigh heavily on me.  But then something so sweet happens that I pull myself out of the pity party and remember all that is good in the world.  Life is about the human experience, and even the smallest acts of kindness go a long way. 

    I came into work on Monday to find a huge support group there just for me.  My co-workers dressed in purple and pink to support me (my favorite colors...and purple just so happens to be the color for the Leukemia and Lymphoma Blood Cancers).   I walked into my office to find all these people, with balloons, and flowers, and most of all, LOVE and support.  It totally blew me away. 

    To see this group of people who aren't judging, and are just there to support me was really amazing. I'll never forget it.  And I can say the same for you all, all you readers out there who love and support me to. I send out a huge thank you.  It means more than you know. 

    So here are the pictures...

    Tuesday, June 15, 2010

    The Game

    So everyday I get an e-mail from Story People.  Some days it is pretty bizarre, and some days it is like YES!  And today was one of those days.  I just got done with my last post and look what was in my e-mail box:


    Here's the Story of the Day:
    Slow Pitch
    How're you doing? I said & he said we're undefeated in our appreciation of the game. That's against incredible odds, he added.