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    Thursday, April 12, 2007 10:35 AM, CDT

    Things are looking up! Today is better in general, because I got a really great sleep last night. Amazing how the busy little people dont encourage sleep. They don’t want to go to bed, but they’re ready to go bright and early. I slept in this morning, what a joy!

    Neulasta at 10:00, ONLY HALF, HOORAY! The neulasta is what causes the most misery to me. It’s a growth hormone, and it gives my bone marrow orders to crank out large quantities of white blood cells. The day I get the shot I feel all kinds of churning going on in there, and then my bones start to hurt. By the next day I feel as if I’m made of lead.

    This time I’m ready with everything I need to stay comfortable. I have been very resistant to taking all the medicine I am given for side effects, because I’m just not a medication person… I like to try to get things in balance first, and then try meds. I’ve had to turn that upside down and get proactive. I went through the list with Grace (Dr. Brown’s assistant) and I’ll take what I need in full, before I’m miserable.

    Maybe I’ll just sail through this one!

    It’s a beautiful day. I think I’ll play in the garden a little, after I have some on Donna’s delicious quiche for lunch. Donna, I was so motivated I ate two pieces last night! Thanks again, so much.

    Now there are some photos, courtesy of Steve mostly. I gave him my password and carte blanche to put what he likes on there. I haven’t deleted anything yet… thanks Steve!

    On to a quiet day, no need to push myself at all, just try and be comfortable and be grateful that my side effects can be managed. The less I resist it, the easier it is.

    That timely reminder came from my Uncle Dave, my father’s brother. My dad fought cancer and lost, many years ago, when he was 44. He had a vicious lymphoma that had metastasized by the time he was diagnosed. Dave has been in closer contact with me lately, in my court 100%. He’s a recoverd alcoholic with 20 years’ sobriety behind him, and quite a resource on putting one foot in front of the other.

    I told him that gratitude is what keeps me going, day after day. I asked him if this one of the things that kept him sober. He responded, yes indeed, and the other thing is acceptance. Good words. One can waste so much energy fighting what is! I am learning to conserve my energy to use to heal myself. It is frustrating to be weak and sick, but it’s what is right now. I accept it as neccessary to send my cancer away for good.

    Peace to all, and thanks. It’s going to be a decent day. A decent day during a round of chemo is a fabulous thing.

    Love, E

    Current time Postscript:

    This was in fact the easiest infusion for me, and the ones after were also easier in general although the cumulative effects of the chemotherapy got worse.  There’s a science to this!  More tomorrow….

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    Sometimes ignorance really is bliss. After my needle biopsy, while I was waiting for my diagnosis, my mom came to the terrifying conclusion that I most probably had Inflammatory Breast Cancer, even though she really tried to talk herself out of it.

    When I received my diagnosis, I called her up and told her “the scoop”. She did not in any way blow the whistle on herself, she did not in any way indicate how she felt about this news. She asked for Dr. Brown’s phone number so she could talk with her personally, and later called me to tell me that she felt “very reassured”.

    I was perfectly happy to let my mom be the keeper of scary information. I figured she would tell me what I needed to know, and she did. I focused on managing the treatments and keeping my momentum, because I understood that this was what I had to do. I took care of myself, blogged, let people help me, and attached myself to fellow survivors and patients that inspired me.

    I looked into IBC a little more after my surgery. I freaked out a bit then for a few weeks, and then decided that it was a waste of my precious time. My self care program continued to be my focus, and the weeks and months passed.

    Now, nearly four years later, I am surfing the net for fellow survivors. I am finding women who were not so lucky as I was, women who waited too long to be diagnosed through no fault of their own, or whose cancer was just that much more of a cussed animal than mine was. I am aware that although I am past the highest risk period, there are no guarantees. I must use every day to good purpose. This is of course something I want to do anyway.

    This dose of reality is something I can cope with now. Not so much before, when I just had to keep my eyes on the prize, the chance to see my two beautiful children grow up! Now that the worst of it is over, I am more than ready to focus on doing all I can so that others are spared. Getting the word out about IBC has become an obsession. Finding hope and sharing it has become my life’s work.

    Sometimes emulating an ostrich is really not such a bad strategy!

    Wow, what a long strange trip it’s been!

    I started the Caringbridge site when I was just about halfway through my four months of chemotherapy.  I wish I had begun much sooner.  Blogging helped me through, but more importantly, I didn’t have to talk on the phone to wellwishers while I felt rotten, and I didn’t feel guilty about it because I knew they could check up on me.  On those days when I felt really abysmal, I would look through all the good words in my guestbook and feel better!  Since that first blog, I posted 408 entries totalling 136 pages.  Most of these were written before 2009.  I also had over 15,000 visitors.  Now that’s support!  You can find the link to Caringbridge to the right of the page.  It’s super easy, it’s free, and if you’re walking the tough path right now, it will help you in more ways than you know.

    So here’s a bit of history from the archives.  I’ll publish the good ones as I go through my old journals.  I’m getting ready to shut down that site, to make way for someone who really needs it.

    April 11, 2007

    Well folks, it’s full speed ahead!

    My white blood cell counts are so good that Tim (nurse) is going to ask Dr. Brown about cutting my neulasta shot dose, which will make this round easier for me. Huzzah, 4 of 4 down!

    Today is wierd Wednesday. I always feel strange on Day 1, kind of racy and disoriented, running hot and cold, just odd. But it’s not bad, just disorienting. By Friday I feel rotten, but this time maybe not so bad if the shot is not full strength.

    The infusion went fine. I was blue at first, annoyed that I have to deal with a cold on top of chemo, but then my ray of sunshine arrived (Flo, of course) bearing Jamba Juice, a sweet, buttery goodie and a big smile. That made things better! It got better still. I made a new friend, Avis, who came in for her infusion, took the chair next to mine and beamed at me the way I like to beam at people. She had a friend visit too, and the four of us passed the time in very good spirits. It even got a little bawdy…the topic of breast reconstruction set that off… where else do people have a good laugh about that stuff?

    Laughter gets me through… Thanks Avis and Company, thanks Terry (my impov teacher) who said, “It’s so hard when your body feels so bad, but your heart is so wide open!” So true, and she knows. She went through it four years ago. I feel this opening getting wider every day,opening into full flower like the intoxicating roses in my garden.  Thanks Steve, for making me laugh this morning, and putting the picture on my website. Thanks Cindy, for the yummy lentil soup I’ll be noshing on while I’m hunkered down these next few days. And thanks Terry, for the Trader Joe’s run today for the stuff I forgot!

    So now I settle in and take care of myself. My only job at this moment is to rest, heal, get well…thank you all for your prayers and good wishes. I truly could not do it without you!

    Love,

    Elizabeth

    Current time postscript:  neulasta was the stuff that you get to instruct your bones to make more white blood cells, so your counts don’t get low.  It made my bones hurt, a lot. I used guided imagery to tell my bones to produce white blood cells, so I ended up getting half the neulasta.  That fourth infusion was much easier.

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