Saturday, January 23, 2010

The Next Steps

So first of all, I'd just like to say THANK YOU to all of you out there who have held my hand throughout this journey.  It has been truly touching. 

Yesterday at work--of which I was there the entire day!!! was so sweet.  My office was like a revolving door with people coming in and hugging me, and doing the happy dance with me, and generally just being happy and sharing love and hope.  People told me that the office had a happy vibrant vibe yesterday.  I certainly felt it. 

And I've gotten calls, and Lia and Andrew visited last night just to hug me and celebrate.  

As for what is next...well, my oncologist said that if my PET scan came back negative after 8 treatments (4 rounds/4 months) then he would not recommend radiation therapy.  This is an utter blessing that my PET came back negative.  Now I don't have to fight the doctor on this--as I wasn't going to do radiation anyway.  And I can rest easier knowing that what we are doing is working.  I feel such gratitude.  ahhhh...yes!

He does want me, however, to continue chemotherapy for 2 more months--4 more treatments.  This doesn't make me very happy, as the thought of it turns my stomach. 

My dad coordinated an appointment with the MD whose protocol we are following for the adjunctive Vitamin C IV therapy, Dr. Jeanne Drisko.  She had my PET scan results, and I told her everything I have done in the past 4 months with regard to chemo, IV C, glutathione/lipoic acid IV, hyperbaric, diet, supplements.  And asked her if she thinks I need to continue on with the chemo these next two months. 

She said that if it were her, she probably would.  Even with all the other stuff that I am doing, we just don't know for sure if every little cell is gone.  She put it like this...these extra months of treatment are like insurance.  And if I am tolerating it well enough, then lets just keep going.  She's seen too many times where people relapse.  And that is not some place that I want to be. 

So, here we go...on for two more months, and well, I guess I can do it.  It will be done before we know it.  And, I am going to cut down my days at the alternative clinic from 4 days per week to 3 days per week.  And eventually down to 2, then 1, then every other week and once a month...So we have a plan now to wrap up that therapy now too. 

So there we are!  On the final leg of this journey.  Let's go on and get this over with!  It's time to think of all the other people out there who are struggling...friends, family, and even those I don't know like the ones  in Haiti. 

Thursday, January 21, 2010


NEGATIVE FOR MALIGNANCY is what the radiologist wrote on his report of my PET scan!!!!!  That's right everyone!!! Guess who is cancer-free????!!!

I am elated right now.  I haven't been this happy since my wedding day.  I have cried, caused scenes, jumped around, laughed, screamed, danced, .... you name it...I am feeling HAPPY!!!


More to come..but for now....its time to breathe a big fat sigh of relief.

Karen posted this photo on her blog  Her talented husband Brian took this at our wedding, and I just love how it captures the happiness of the day.  Thank you Karen and Brian!

Tuesday, January 19, 2010

The Wait

Well, the PET scan is done.  And pretty non-eventful.  I was there at 7 this morning, and they put me in a nice and comfy room.  With the lights dimmed I reclined and curled up in a blanket and plugged myself into my ipod.  It was relaxing, and I floated in that calm space between sleep and wakefulness.  Then guess what song came on shuffle??  Let it Rain!  I have 4,000 something songs on my ipod.  I couldn't believe how appropriate it was.  It is like my battle song.  And granted, first thing in the morning, while relaxing, isn't the best time to listen to dance electronica..but I still turned it up loud, and it felt good.  Minutes later the nurse came and got me, and I was scanned.

And some good neck isn't burning like it was last time. :)

So now we wait.  I should have the results in a couple of days.  I'll be sure to let you all know right away. 

Much love to you all!

Photo by

Tuesday, January 5, 2010

Update on Timeline

Ohhhh... and I guess you guys might want to know about what my timeline is here??

Well, we met with the oncologist yesterday.  As of now I've completed 7 chemotherapy sessions and about 50 Vitamin C IVs.  The oncologist knows that I am doing this alternative stuff, but doesn't really buy into it, and doesn't even really seem that interested in it at all.  But, he's not fighting me on it, so that's good.

I did ask him yesterday after he's seen me and we've talked about my experience if he thinks I am fairing better, worse, or equal to others he's treated for this same condition.  He said, well, I do have a patient who is your age and treating the same thing and he isn't tolerating the treatment very well at all. We expect the same outcome of curing his cancer, but he really is having a much harder time than you are having.  But, that's an N of 2 and I can't draw conclusions from that.  Everyone responds to this therapy differently. 

And so yes, I'll give him that.  People do respond differently.  But I like to believe that these supplements I am taking everyday, and the vitamin IVs, and the hyperbaric oxygen chamber, and my diet are making a difference.  I am trying to eat organic, whole-foods, and avoid sugar and alcohol.   I haven't lost all my hair.  I am still menstruating. .I don't have mouths sores, neuroapathy, heart or lung problems, edema.  And I am still having a good full week of feeling good every other week. 

So what's next?

Well, I get a PET scan the week after my 8th treatment.  For a PET scan the inject you with glucose that is irradiated.  They use glucose because they know that cancer LOVES sugar and it will go directly to the tumors.  And then they take an x-ray of you.  The irradiated glucose will show up, and show where the tumors are.  So  yes, they all know this.  It is the foundation of a major tool they use to diagnose and follow cancer therapies.  So why is it that they still recommend gatorade, cinnamon buns, and don't strongly recommend a sugar-free diet?  That still escapes me. Well, actually, I am not as flabergasted as I was before I started treatment....on diet...there is a use for indulgence when it comes to matters of the pshyche.  When I absolutely don't feel good, or have had a stressful day, I am going to eat Mexican food, and it will be okay--and it makes me happy.  And I enjoyed the holidays with a semblence of strictness, but was a little more lienenant with myself...anyway...I could expound more about diet strictness at a different is a deep, many-year lived struggle...

On my first PET scan I could feel where my cancer was.  My neck was burning after the injection.  It was on fire. 

I just hope that I don't feel that way again this time.  I hope so badly that this cancer is gone. 

So far, all visible and palpable signs of my tumors are gone.  There is a slight swelling on my left collar bone.  But the doctor says that it doesn't feel like lymphoadenoapathy.  I sure hope so. 

The doctor says that if the PET scan comes back negative, which he completely expects, then he won't recommend radiation, and we will just do 4 more chemo sessions, and I should be done!!  And it will be behind me. 

So here I sit.  Thinking that I didn't want to do more than 8 sessions. I don't want to do an additional 4 sessions.  But, I also don't want to do radiation, and he said that is a possibility.

I asked him what would happen if we didn't do the additional 4 treatments.  He said, well, the PET scan isn't extremely sensitive.  And even if it is negative, there still may be a residual few cells left. And if we don't kill it dead, then there is a chance of recurrence.  And if it comes back then I have to do this horrible thing called autologus stem cell transplantation.  This is where they take stem cells from my bone marrow and save them.  They then give me chemo so strong that it kills all of my bone marrow.  I have to stay in a hospital for weeks during all of this as my immunity will be destroyed.  And then, they reinject me with my stem cells to regenerate the bone marrow.  It sounds horrible. 

So scare tactics.  ....  it kind of works.  ... it kind of makes me want to just do this therapy until the decided end.  Which, who decides this, I don't know.  He has no way to factor in all this alternative stuff I am doing.  And neither do I for that matter. 

And all this really hinges on the fact that the PET will come back normal.  We don't know that yet, and I don't even want to think of what it means if it doesn't.

So there we are....still up in the air.

My PET scan is scheduled for Tuesday, Janurary 19th. I should know within a couple of days the result of that.  And I am sure  you'll be hearing from me then.


So here begins a new year.  The cold air, and long nights leave lots of room for cozy introspection, and I find I've been doing much of it lately. 

2009 has been, well, quite unbelieveable in terms of life experiences.  It is definitely a year I will never forget, nor want to.  I've experienced a lot, I've loved a lot, and I've learned a lot. 

Michael and I nested more deeply into our home together.   We started the year off by building a strong and sturdy retaining wall in our front yard.   We have started to learn about gardening, and growing our own keep. We successfully had our first (small) garden enjoying its bounty immensly.  We lovingly visited it every single day, often twice, to see what gifts it brings.  We have so much to learn, but you've got to start somewhere, right? In my emotional state right now, symbolism oozes from this experience together.

This year has brought us more awareness of the local foods movement, eating organic, and the importance of sustainability--things we are eager to develop further as we form more completely our desires for a creating a life and a career in the mountains. 

We spent a lovely week at Kripalu together, deepening our love for one another, connecting, and breathing in each moment that is that amazing magical place.  Kripalu is one of my most favorite places on earth, and I am so grateful that my partner in life resonates with it as well.  Again, these experiences are helping us form in our minds what it is that we'd like to create.

Our engagment at the Leonard Cohen concert in Phoenix, AZ after a weekend hiking and camping in Sedona..was...unbelievable.  I will never ever forget that weekend.  It will always remind me that we are young at heart, spontaneous, adventurous, and passionate. 

Our souls were fueled throughout the year by camping in our own backyard. The southeast has some of the most beautiful scenery I've ever seen, and the magic of these old Appalachain Mountains runs deep.  L.E.A.F, Transformus, Sandy Ford, Kiawah., Carter's Lake.  My life is rich with experience.  And our friends.  WOW. I've got some fun friends who like to get out there and live it.  And I love that!

And of course, the wedding.  There are no words to describe the feelings I felt that weekend.  It was everything I had ever dreamed of as a little girl and more.  We kept trying to take time outs to just remember a specific moment.  Let's burn this one moment in time in our brains and remember this feeling...  It was a true celebration of the heart.  We were surrounded by family and friends and LOVE was pumping its way through every cell in my body.  The beautiful blessing way, ahh........Michaelle and Lia, thank you thank you.  And thank you to every woman who was there.  You truly blessed me.  Circling with women the day before my wedding was fuel for my feminity and reminds me of this wonderful bond that only women can share. 

The rehearsal dinner, a perfect celebration to precede the grand celebration.  Laughter, love, family, friends.  FIRE! Drumming! Dancing! 

Saturday, October 3rd., I woke up and the view from my bedroom pillow was that of crystal clear blue skies, and the foothills of the Appalachain mountains smiling upon me.  I stepped outside and the crisp air almost took my breath away.  This is my wedding day, and it is perfect. A beautiful day surrounded by days of rain.  The day was again filled with my dear women friends and family.  Primping and preening, and creating memories.  Windows open, breeze blowing through curled hair, women laughing, telling stories, reliving memories of years past. was true woman hood, a sacred and ancient phenomenon.

And of course the ceremony and celebration.  It was a blur.  But I had this handsome man by my side.  My husband, my love, my life.  It is the perfect memory.  And I call on it whenever I need it.  It is almost like I can't put words to it, because nothing will do it justice. Every single second of that day was joyous. And happy. And full. And I thank everyone who helped make it happen.
As I sit back, these some three months later, I see that the gift runs even so much deeper than just that weekend.  For one, I've married a partner to my soul.  And the gift keeps giving every morning when I wake up next to that angel of mine.  And then a hundred other times thorughout the day. 

I also fully appreciate the entirety of what it means to have a wedding.  All the months leading up to the wedding...the planning, the dress-making (Margie, what a gift this was...whew, makes me tear up to think about it), the parties, the phone conversations!  It is all so special.  It is a time to integrate in new family.  A family that I LOVE so dearly.  Michael's family is now my family too, and it feels GOOD. 

The holidays that close out the year this year were exponentially more special.  It is amazing the light that is cast on life when it is threatened.  Fortunately Halloween, Thanksgiving and Christmas fell on my 'good weeks' which was a blessing in itself.

Halloween with my family at Carter's Lake.  I was at such peace that weekend.  Just a few short weeks after the start of my therapy, when I was still scared and unknowing of what was to come.  But that weekend was blissful.  I was so happy surrounded by my family.  My parent's who I am so incredibly grateful for to have such a loving and deep relationship and connection with.  And Margie and Ray.  ...  family.  Again, it feels good. 

Thanksgiving with Patty, Becky, Pat and Michael and Curtis...or as we called it "Michael and the Lesbians"  (they want to start a band) was so nice.  We celebrated in our home and it was just another reminder that I absolutely LOVE cooking  for people and having them warm our home.  

Christmas was so nice and easy this year.  Michael's parent's were able to make it too!  We celebrated Chrsitmas Eve at mom and dad's, and Christmas day at Margie and Ray's.  This tradtion we've kept for several years now, and I love it.  And I LOVED this year.  I was again...almost manic.  Life felt so good.  Being around family and friends felt SO good.

And then Michael and I escaped for a romantic getaway to Callaway gardens...where it was just that...romantic.  Ahhh, so romantic.  Even the cheesy festival of lights trolley ride was unbeliveably fun because I was sitting there with my love.  And he was keeping me warm. 

New Years Eve...well, what can I say, I was sick.  I had just had chemo, but it was okay.  Michael stayed with me.  We watched such bad movies that they were almost good.  I fell asleep before midnight, and he tenderly woke me up at 5 til, with laptop turned on in bed to stream the NY ball drop.  We counted down, we kissed, we said Happy New Year, and I curled up closer to him and soundly slept while he fed his night owl desires with computer games. 

New Years day with friends, eating all the symbolic foods.  And laughing, and being together.  It was really really nice.

This weekend I got to begin this new year circling with women, and it was powerful.  I was sick, and not feeling good, but I picked myself up, and drove myself to Athens to do something good for my soul.  And I was grateful for it.  It lit that fire again in me that I know I forever need to feed.  The sacred feminine. 

And I came home from that to a wonderful evening with friends from Brazil.  They are here visiting, and I wanted to see them and hug them and give them good hospitality as they did for me when I was visiting their home. 

So, yes, I've been diagnosed with Hodgkins Lymphoma, and I am going thorugh treatment that is not easy.  I feel bad half of the time.  But I get respite.  Above the physcial discomfort I have had to learn to deal with (or at least try) the emotional stuff that comes with such an illness and all the associated complications.  I have experienced some of the toughest things I have ever experienced yet in my life.  And it is still not over.  As I sit here and type, my brain is still being held in that vice clamp, and my stomach feels as if I've been on a spinny ride at Six Flags for too long.  My emotions are raw and at the surface. I don't feel like standing up for very long.  But at least I am experiencing it.  I always said, I'd rather live with sad so that I can enjoy the happy.  Well, that about sums it up.  As the pits get deeper, so do the peaks get higher. 

And I am fine with that. 

With this illness I have been changed.  I see things differently.  I remember so vividly driving down my street this fall and realizing I might very well cause an accident because I was in awe of the beauty of the trees

I've also experienced the power of compassion and kindness.  You all.  You in my life have left a deep impact on me.  And I thank you.  You will make me a better person for it.  I hope less selfish, I hope more giving.  Because it makes a difference. 

So here is to 2010.  I hope to keep experiencing life deeply. 

I wish you all a happy new year filled with love and light.

the picture is of Michael cycling our way through Callaway Gardens December 27th, 2009.