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...