Finally, answers

Thursday night, I was admitted to my hometown hospital in awful pain. After three days and two nights trying to get my pain under control, last night I was transferred by ambulance to the University of Wisconsin Hospital in Madison.

I just got out of a three-hour MRI and, as I returned to my room, I was greeted by my oncologist who told me that the tumor that had been stable while I was on the chemo had grown dramatically in the last seven weeks and now requires surgery (probably before Friday) and then weeks of radiation.

I’m sorry, that’s all I know right now. Thank you from the bottom of my heart for all the good wishes and prayers! They made all of this bearable.

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More than I can take

It’s almost 1am and I can’t sleep; the pain is excruciating. The only relief I’ve been able to get was from an amount of Percocet so high it made me unable to function from exhaustion and nausea.

Claudia sobbed for an hour today when I told her I couldn’t drive her to Ft. Dodge for camp so I’m determined to make it through the night without the Percocet so I’m clearheaded for the drive in the morning. And the oncologist has scheduled an MRI for Monday in Madison which seems both a million years and miles away.

Right now, I could swing being a patient or a mom, but trying to do both is killing me.

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More excitement that I can handle

Two days ago I threw my back out playing Just Dance at a Fourth of July get together because that’s how I roll. The last two days have been painful, but it had been getting better… until tonight.

Moments ago I raised my arm just to waist height while trying to put away leftovers after dinner and was knocked to the floor in tremendous pain. Unable to stand up or even sit, I hunched on all fours on the floor and put the Lamaze breathing I never got to use in my three C-sections to work. Claudia came rushing in and stated, “At safety camp they told us if our mom or dad was on the floor couldn’t get up we should call 911,” which, for some reason, made me laugh, which made the pain shooting through my spine worse.

The moral of the story? I need to find more exciting ways to explain my Gollum-like posture. This throwing-my-back-out-while-sneezing crap is getting old. Who’s up for skydiving? Or toddling with the bulls?

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Independence Day

Fourth of July parade!
6303238_origYou haven’t seen the Fourth of July until you’ve seen a small town do the Fourth! The parade was over an hour long, the kids got pounds of candy, and you know everyone lined up for miles!

8635636_origThe kids and I love Eric very much but even we can’t look at his name on this float. Turn away, Claudia!

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A summer evening in Iowa

Sometimes I look up and it seems as if months of the children’s lives have flown by and I haven’t taken a single photograph.  Since I witness them day in and day out, it sometime appears that they have been this size forever, even though I know, deep down, that’s not true.  Some part of me realizes that I will look up in what feels like a moment from now and they will be all grown up so tonight I stooped to grab a photo of each of them.

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Tonight was lovely.  It was warm, but not too warm.  There were no bugs and no bloodshed, a rare thing indeed, with three children.  The girls danced and went on the swings off and on for hours and Will played the entire time in the mud pit that is his garden bed. 

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You win some, you lose some…

I know people are wondering how things are going down here and your love and concern mean the world to me.  I am going to put this out there so that you can know the latest but I need to preface it with the caveat that I can’t talk to anyone about it right now.  I am so touched that so many people love and support me but I don’t think that I will be able to keep it together if I have to talk to people about this and right now I really feel like I have to keep it together.  Feel free to comment here or talk amongst yourselves.  Soon I will have dealt with this and I will be me, but in the meantime I am hiding under my metaphorical covers.

So, today… today kinda stunk.  Today I saw my oncologist and there was evidence of a new tumor in my brain.  We are going to continue  the next two cycles of chemo as scheduled to see if the tumor stops growing, shrinks, or disappears all together and I will know more at my visit at the end of June. 

What does this mean?  Mostly what this all means, at least right now, is that this trial wasn’t the cure that I was hoping it would be.  Right now the best case scenario is that the chemo is slowing the growth of the tumors down while I am on the medicine but that once I am off of it again they will grow however they want.   If the tumor remains in two months despite the chemo we will look at what needs to be done about it.

Today has been hard.  I am disappointed.  I fought hard to get into this trial and everyone around me has fought to get me back and forth the 1000 miles to Texas. People have given money, brought meals, watched my kids, let me crash with them, and just stepped up amazingly when I have dropped the ball.  I am so grateful to everyone for everything you have done.  I’m not giving up, I’m just taking a few days to process and then I’ll be ready to kick some butt again.  In the meantime, thank you.

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Gamma knife

1937109_105365107132_470020_nThe Gamma Knife Radiosurgery goes pretty much as promised. The Valium is really not enough to take the edge off, but I was not really feeling much edge anyway. The shots to numb the areas where the pins would attach the ring to my skull hurt like hell and I found myself, with tears in my eyes, using the Lamaze breathing that I learned in childbirth classes six years ago but have never had to call upon in my three Cesarean Sections. The shots are put in one by one and while I want to beg them to let me get my bearings between each one they made no such offer. Not wanting to appear weak, I stay silent.

There are four pins that attach the ring to my head, two on my forehead and two on the back of my head. The pin that they insert in the back left side of my head somehow misses its anesthetized mark and its insertion and residence there, although short, is excruciating. It seems the neurosurgeon asks me something about whether it is pressure that I am feeling and I am somehow able to communicate to him, although I am not sure that it is in English, that it is not merely pressure that I am feeling. He removes the pin, gives another awful shot, and reinserts the pin and somehow, once everything is installed, despite that awful looks of it the contraption isn’t the most uncomfortable thing that I have ever worn. I am surprised and pleased.

There is a CT scan to help them line up the radiation precisely and then I am given breakfast. One of the friends who waits with me had brought a banana and sweetly offers it to over and over in hopes, I’m sure, that it will make this all okay.

The procedure itself is painless but somehow brings out in me all the emotions that I should have been probably been working though in the weeks since diagnoses. Alone in the room, literally bolted to the table by my head, being moved this way and that from time to time by the mostly unseen techs; I am suddenly overwhelmed by the sad loneliness of it all. It makes me miss my mother. I want her here to hold me, to stroke my hair and tell me that it will be okay. And then I am sad anew because I realize that if this doesn’t work, my own children will lose that comfort from their mother as well.

I realize as the machine moves and whirrs that I am, at that very moment having things burned from the center of my brain. I understand why my friends have been so weepy and worried these last few weeks. I see suddenly that while it almost never happens, it has happened to me again and again: the tumors have come back and they have moved and they are now threatening the very thing that makes me me. I have a brain tumor and suddenly benign doesn’t seem so benign.

As they remove me from the machine and the Radiation Oncologist comes to remove the ring, a single river of blood runs from my left forehead pin spot to my eye and down my cheek. Although there was pressure the procedure was not painful, and yet is was all I can do to hold back my tears. Afterward, I am taken back to the family room where my friends, who have nothing in common except me and their dislike of one another, take turns mothering me; alternately wiping the blood from my face and trying to remove as much of the marker ink from the pin placement site as they can. No one offers to hold me or stroke my hair, but I have a feeling that if I asked they would quickly accommodate me. And I wish, more than anything, it could be enough.
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