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.

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!

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

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.

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!!

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 :)

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...

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.