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!

4 comments:

  1. Evie, I truly believe you will find your pony! All is good . . . b r e a t h e . . . . Dr. Hamrick is a really good doctor and is doing what he knows to do. The other good docs will weigh in and the path will become clear. B r e a t h e . . . . Luvnhugs, Mom

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  2. Love You Sis Evie Know I feel your pain. Looking forward to comparison stories many many years from now. Hug my brother for me. Keep breathing *inhale..exhale

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  3. Eve, you are doing all the right things.... Perfectly... This will all work out fine... Keep the faith..... Relax and try to breathe!!?..... Love you so much!!
    Dad

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  4. hey grrrrrl! You have been through so much these last few weeks. It's totally normal to cry and be pissed off. I hope the pain is decreasing everyday and that your tissues will heal quickly and happily- enjoying the extra space minus caterpillar/turtle. You are handling all of this like a trooper. Keep up the good work! love, cass

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