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.

The news no one wants to hear...

I was debating on whether or not to get my PET scan before my dear friend Amanda's wedding in New Orleans this week because if the news was bad I didn't want it to hamper my excitement and love directed towards the lovely couple.  But this is me we are talking about after all and we know I have no patience for things.  So I had it scheduled for yesterday, and thought in my mind that of course everything would be fine and the New Orleans wedding would be an even greater celebration. 

But, the news was not fine.  Dr. Hamrick called me this morning and told me that my cancer was back.  He asked if I wanted to call my husband and parents into the room before he described what was next.  He was so kind and patient and called me back right away after I gathered the troops (we were at work, and it just so happened all three were easy to find!  just when I needed them, they were there..that's how its been since the start). 

So we listened to my fate yet one more time from him.  He is great at explaining things.  Bottom line is that I have to go see a specialist who treats bone and blood cancers.  Initially, my cancer was spread throughout my neck, chest, and behind the lungs.  This time there is only one tumor, and I think it is actually in a different place than it was before.  It is 1 cm x 3cm and is very close to my heart pericardium.  I can actually feel this, and in my denial state of late I have been just thinking that I have heartburn or something. I never felt this sensation before with my other tumors.  But my heart has been fluttering more lately, and there is a definite sensation there in my chest.  When I touched my chest today there I noticed that it was sore from me unconsciously touching and rubbing it. 

Dr. Hamrick first started out by wetting the strong fires of guilt in us about our decision to end treatment after 10 doses of ABVD.  He said that for a tumor to come back this fast, it means it was an aggressive tumor and probably would have come back even after 2 more cycles.  

So what that means is that I have to change chemotherapy regimens.  They are going to do new drugs called ICE therapy.  These drugs are administered over 3 days every 3 weeks.  I will either do 2 or 3 of these rounds.  After that I have to get my stem cells harvested and then they will do a massive dose of chemotherapy to totally kill every living thing in me.  I'll probably be hospitalized for awhile because my immune system will be kaput.  Then they put my stem cells back and I will be cured. 

Hodgkins has a 90-95% cure rate.  30-35% of people relapse in the first year after standard ABVD treatment, but this secondary treatment seems to be fairly effective at reaching that 90% cure rate. 

So it begins again.  I already have a list of doctors I need to call for appointments.  We are going to go see a reproductive specialist to discuss our options there.  I probably have to get some other sort of port put in for the stem cell transplant. 

I am totally totally fried.  I am angry.  I am pissed that despite my efforts to live a healthy lifestyle and approach this holistically, it has returned.  I feel like going out right now and sticking my face in a gallon of ice cream.  Except that my appetite is totally gone. 

But, it could always be worse.  And I have to keep reminding myself of that.  This will just be a few more months of hell to go through.  I did it once, I can do it again.  At least I have love in my life and an wonderful support group.  I am sure gonna need you guys, I'll tell you that right now.  The second time is a bit harder to swallow. 

Chin up though!  Michael took me home from work and we went out to the garden and felt happy for a moment.  Now we are lounging on the couch just trying to process this.  I am lucky to have him.  He is a work-a-holic, but didn't bat an eye when he saw he needed to be with me at home today. 

So time to pack for a glorious wedding weekend!!!  I was worried that I would be a downer, but I am seeing that it, once again, will be what the doctor ordered.  De ja then treatment!  haha. 

Thursday, June 10, 2010


This post has been coming for awhile now, but I've learned since starting this whole blogging experience not to force it.  My voice will come in due time.  And tonight is no exception. 

For mother's day this year we all gathered at my mom's house.  I've felt uncomfortable about this for the past few years as Mother's day has fallen on the same weekend as a big music/arts festival that we've enjoyed going to.  But, we want to see mom anyway, and she graciously hosts us on this day to celebrate her even though we show up un-bathed and tired from the weekend long festivities.

This day was also the day to celebrate my aunt's 60th birthday which she had passed a few days earlier.  I love this story about her...she was born May 5th, 1950.  On May 5th, 1955 she turned 5 and was 55 pounds!  Talk about a lucky number! 

Anyway, we all had plans to gather at my parent's house to celebrate mother's day and Patty's birthday.  A week before this Patty wrote and asked if it would be okay if she invited a man with our same surname who is somehow related to us in generations past.  Grandpa had been in touch with him years back as they were both interested in genealogy.   But Patty had reunited with him on facebook! 

Of course we all said a boisterous yes as we love meeting new people, especially ones named Bralley who could have the same quirks as ourselves. 

As so it came to be, this man who shared our name came to dinner and we absolutely adored him.  He is an eccentric soul, an old soul, and seemed so clearly a Bralley even though we are so far removed from each other.  It is amazing to me how those genes hold true!!!

So I left that night feeling happy to celebrate women in my life who I love so much, and also to have met a new family member of sorts. 

Fast-forward weeks later and I think I mentioned something on facebook that let on that I was a cancer survivor.  This sweet new-found relative of mine wrote to me and asked to confirm his suspicions.  We hadn't gotten to that conversation over dinner that night.  I said yes, and within days he posted the most beautiful, heartfelt painting and poem I could have ever received at that moment in time.  And within days of that I had it in hard copy in my own hands.  This man, whom I have only met once, spent time creating this beautiful piece for me, and I felt the love.  Deeply.

I fell in love with this piece and he told me more about it:  Well, there's seven chakras, and high energy flow and cells moving and realigning and channels coming and going and combat of the fierce king and victory of the greatest kind. And healing of the permanent kind.

And YES!  it is true.  The seven chakras. The high energy flow.  We need all of these open and working for them to flow in health.

This is what I've been working with in my women's circle--and have been off and on for years now.  I've always felt like these lower chakras resonate easier with my psyche.  They dominate me in fact.  I love the grounding of the first chakra.  I am a "nester" and cherish my home and community.  I feel the fluidity and emotion and connection of the second chakra, the third is power and will, which I can manifest.  And of course the fourth chakra...the heart...I breathe and bleed here.  But once we start talking the upper chakras I am at a lack.   My energy flow is blocked. 

My cancer started just above my heart, and spread thorughout my chest and neck..

I am a worrier, I am tense, I cannot seem to find peace in meditation, I often cannot find my voice.  And transcendence...something that is talked about freely in my such an abstract term that I can't even begin to realize its meaning. 

I have had mystical experiences enough in my life to know that there is something greater than what I can begin to describe.  Yet in the day to day my mind can get wrapped up in the nuances of the human experience. 

There is a photograph of me when I was less than a year old. My father was holding me and I was as stiff as a board.  Why was I so tense, even then?  And now, I still find myself wrapped in emotion at times, full of worry.  I often wonder if I got sick because I haven't learned to let things go and breathe let myself experience those upper chakras and their gifts. 

This is a really round-a-bout post...

But the drive for me to write this was sparked by my comment tonight on facebook. I mentioned that I was "just in from a stroll through the garden at twilight...I love June in GA--lightening bugs, owls, bats, moist, dense air and that mystic presence that fills my senses."

And this sweet new friend/family of mine mentioned Pan and how he draws us in. I replied that I would stay out there forever if it weren't for the mosquitoes. And he said---transcend baby doll, you know how.

And that statement alone

Do I know how? I have never thought so. I wish I could transcend. Do I know how? Signs are pointing at an increasing pace the fact that now is the time to embrace this. Patty just wrote me today and reminded me about Byron Katie and her Work. And posted on my blog this statement "Are you beginning to understand that it’s not reality that changes, it’s what you believe that changes reality?"

So here it is late, and I am rambling. But I am thinking too...about how my mind can transcend and tickle those upper chakras and let the healing energies flow. 

Thank you Russ and thank you Patty. I am so lucky to be able to call you family.

Tuesday, June 1, 2010

PET Scan

Well, after what seemed like 16 transferred calls between needing to get my past PET scans from St. Joe's and scheduling my next PET it is done! I get scanned again on Monday, June 14th.  I can't believe how nervous I am.  I shouldn't have done this during my lunch break as now I am having a hard time concentrating on work. stomach is in knots.