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Devastated

Friday, March 21, 2014

Rebecca's MRI was yesterday. I will quote the Meyers for the results:

:::The MRI showed a mass behind Rebeccaís left eye that wasnít there on the previous MRI. The doctors at CCF are communicating with the doctors at CHOP, who will determine what they can do.

We may be headed to Philadelphia this weekend, if they tell us they can remove the tumor. If they canít remove it, given the tumorís growth rate, Rebecca will likely live anywhere from a few more weeks to months, but nothing is impossible and studies are always being opened.

That is literally as much as we know right now. We are staying in a holding pattern until we get a decision from CHOP, and must ask you to do the same. Please donít call or text the house or our cell phones. Comments here are fine, but we really canít handle a flood of calls right now.

If we havenít contacted or donít contact you directly, please donít take it personally. There are a lot of things we have to deal with right now, Rebeccaís sorrow and fear primary among them. We havenít told her that she might die soon, because we donít know that ourselves, but we have told her the bad rocks are back and that she might have more surgery and radiation treatments.

To which she said: ďI hate that dumb olí rock and I want it to be gone!Ē And then curled up in our arms and wept.:::

I've been sitting here for five minutes, trying to figure out something to say that doesn't sound self-centered or self-indulgent. Right now I feel like I've been hollowed out and then smashed flat.

  
  Member Comments About This Blog Post:

WILSHAR7 3/24/2014 12:25AM

    Is Rebecca your daughter and how old is she? Prayers sent your way for Rebecca that the lord's will be done.

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DOGLADY13 3/23/2014 10:18PM

    Dear Lord, let Rebecca and her family know love, warmth and support through this terrible time of fear and sorrow.

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GEMINICHIK 3/21/2014 8:48PM

    Lord spare this child Rebecca any suffering. Please Lord guide this family let them feel your amazing power and grace, bestow upon them the love, faith and guidance they will need to conquer this trial, we praise you Lord.
In Jesus name Amen

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NATPLUMMER 3/21/2014 4:40PM

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MARILYNROBERT 3/21/2014 1:23PM

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LILYDOG11 3/21/2014 12:57PM

    I'm am very sorry I will pray for a miracle and I hope you do to because miracles do happen and I feel his miracles are performed thru our medical doctors and all the new medicine we have. Prayers for a miracle are going your way now. emoticon emoticon

Comment edited on: 3/21/2014 12:58:58 PM

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THRIFTEE1 3/21/2014 12:54PM

    You are in my prayers!!! emoticon

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HILLSLUG98239 3/21/2014 12:39PM

    I am so sorry. I have no words. emoticon

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"Not those people"

Monday, March 17, 2014

On Thursday our goddaughter Rebecca will have yet another MRI to determine whether the toxic chemicals being poured into her system are successfully keeping her brain cancer at bay.

Rebecca is 5 years old.

She was diagnosed in August. Ferrett and I were there in Philadelphia with her and her family while she underwent brain surgery to remove the tumor. We were there to see the x-rays and hear the discussion of the diagnosis and the treatment plan and the prognosis. We cared for and cuddled her siblings, and hugged her parents and did what we could to help care for them. We have been along for every MRI results meeting since they were able to return home permanently after proton radiation treatment. We have walked for cancer in Rebecca's honor, donated to and helped raise money for her sister having her head shaved for St. Baldrick's just yesterday.

I still can't quite believe that Rebecca has cancer. Because the Meyers aren't supposed to be a family that goes through this. They are wonderful and amazing and I consider it one of the greatest gifts that I am part of their lives. In my mind, this can't be happening because they are simply "not those people."

The thing is, "those people" is not a derogatory designation in my mind. My extended family? TOTALLY "those people." If one of my siblings or cousins was diagnosed with cancer, I would be saddened and shocked, but I would be able to accept it. It wouldn't feel so impossible. When Ferrett's stepdad contracted ALS, it was awful, and that he died so quickly from it was terrible and tragic. But while I felt like it was unfair and I was grief-stricken, I never went through this ongoing sense of, "but...this just can't be!"

I'm not quite sure why Rebecca's cancer feels so different from so many other illnesses and tragedies, but I do remember the one other person I felt this way about: my friend Annie, who died of inflammatory breast cancer when she was just 36, the mother of four small children. Annie and Grant were also a family was wonderful and amazing, and the notion that Annie, who worked so hard to feed her family fresh, organic food and lived such a green lifestyle, could have this genetic timebomb within her that mowed through all those good decisions? It just wasn't right! It's been at least 14 years since Annie died, and I still get moments when it pulls me up short.

Because the fact of the matter is, there is no magic that protects any of us. There is no magical good fortune that keeps illness and accident and tragedy at bay. We are, each of us, vulnerable.

I don't know how to end this. It's not a happy entry. I have no deep insight that leads to a positive outlook right now. Do I just fall back on platitudes: hug your loved ones; appreciate life's every moment? The truth is that this is a dark and scary place, and I'm not in a good headspace about it right now. I spent yesterday afternoon cheering on Carolyn and her friends as they got their heads shaved, getting snuggles from Rebecca, and visiting with friends as we all hang on together trying to feel like we are making a difference. And we are, overall. The money raised goes to research that will help kids in the future, just as the money raised a decade ago and more went to the research that has led to developments that are giving Rebecca a good chance of beating this.

But each of us, in the moment, is just clinging to each other against the cold, howling winds of chance. We stick together for comfort and support. And right now all I can think about is Thursday, when we will be there with Rebecca's parents to hear the verdict once again. I believe right now that it will be fine, that the MRI will be clear. But believing it and knowing it are two different things, and we won't know until then.

  
  Member Comments About This Blog Post:

NATPLUMMER 3/18/2014 11:17AM

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DOGLADY13 3/17/2014 7:52PM

    I have no words of wisdom to help ease your pain. It doesn't make sense. It's cruel. It's not fair. You are a wonderful friend to Rebecca's family. What a treasure you are for them.

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CAROLINAKIWI 3/17/2014 4:49PM

    Cancer is a terrible thing. My daughter beat breast cancer three times but the fourth time was inflammatory breast cancer and as you know, it is almost impossible to beat. She did have about a year more than they thought she would have but you don't think you are going to lose a daughter at the age of 46. I will say a prayer that her test comes out clear and put to rest your anxiety for her and her family.

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HILLSLUG98239 3/17/2014 12:21PM

    We have a deep need to understand. Even though we know intellectually that diseases can be capricious and strike anyone, we look for fault: you smoked, you got cancer. You drank, you got cancer. You lived downstream from a chemical plant, you got cancer.

When a disease like this strikes a child, we're unmoored from the cause and effect chain we cling to. There's no one to blame but the fates. And then we have to stare in the face of the cruel nature of fate: you were dealt a lousy hand, and no amount of bluffing will change that.

Although no one in my family has cystic fibrosis, I'm very active in fundraising for the Cystic Fibrosis Foundation. CF is that genetic lousy hand of cards: You don't know you're a carrier until your child is diagnosed. Even if both parents are carriers, there's only a 25% chance their child will be born with a CF mutation.

There have been amazing breakthroughs in treatment, but only because of the passionate activism of CF families. What I see in CF families is a lesson everyone should learn. They spend their lives having experiences and building memories. The median age of CF patients is now 40, but there are particularly nasty variants of the mutation that tend to mean a much shorter life span. If your child succumbs, you want to know you did everything you could to fill that life with meaning and experiences.

Childhood cancer is similar, except that all babies are tested for CF at birth (at least CF families know early on, as opposed to getting a diagnosis after months of questions). It's unfair. It's terrible. You hope for the best, but you also treasure every moment, just in case. And it takes awareness and passionate fundraisers keeping hope for a cure alive.

I will hope alongside you. I am hopeful Rebecca will be one of those passionate fundraisers when she's an adult, always giving thanks for the medical team that saved her life, and agitating for more dollars because no child should have to go through what she did.

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5 miles, complete exhaustion

Saturday, March 15, 2014

My daughter and I completed a 5-mile event today. It was a race, but we weren't really racing anything, so I'll stay with event. Our time was 1:18:35, or just under 16 minutes per mile. Slow, but hey, five miles!

And then, because I said I had to, I went to the gym. I slowly pedaled for two miles and did a little core work. But I did it. 15 days in a row now.

I'm really tired. Like, considering going to bed. I feel obligated to stay awake until 7, but unless I rally it's gonna be an early, early evening.

  
  Member Comments About This Blog Post:

GODDREAMDIVA1 3/18/2014 10:57AM

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NATPLUMMER 3/16/2014 9:34AM

    Yay! I hope you got some refreshing sleep.

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DOGLADY13 3/15/2014 11:37PM

    Enjoy your rest. Your body is giving you a boot in the butt. I never ignore those signals. Mine was last Sunday when I slept off and on until 1:00 in the afternoon.

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"Well, I'm back."

Friday, March 14, 2014

Today, I walked through the door of the house and said, "Well, I'm back." The last line of The Lord of the Rings: Return of the King. It made me a little teary. You see, I started on the Walk to Rivendell back at the beginning of 2006, and after 7 years and 2 and a half months, I have completed every step of that journey. I walked the miles with the Fellowship to Rauros, then followed Frodo and Sam to Mount Doom and through their rescue by the eagles. I then "flew back" to Rauros and followed Aragorn, Gimli, and Legolas through the final battle. Then once again, flew back and followed Merry and Pippin until they got split after Helm's Deep, following first Merry and then Pippin. With the Fellowship reunited, I walked and rode the journey back to Hobbiton, and finally the journey to the Gray Havens and back. A total of 8,349 miles.

I've kept records throughout all those years. I've only counted the miles that were part of exercise, not just walking around for errands or work. The mileage tells the tale of where I've been emotionally and physically. In 2006 and 2007, I walked over 1,000 miles. But from 2008-2011 my mileage was minimal--shocking minimal. As little as 282 miles in 2008. Part of that was that in 2007 I was hit by a car on my bike. I wasn't badly injured, but I lost my nerve for riding. I went from riding over 500 miles to not riding a single mile in 2011.

But at the end of 2011 I took control of my life again. I joined Spark People in September and started working out. In 2012 I completed 2542 miles, and in 2013, 1684. Considering how crisis-filled 2013 was, I am not surprised that my mileage fell off considerably.

And now, I have reached the end of an adventure. The last of the Walk to Rivendell. I'm proud of that accomplishment.

So what's next? After a short celebration, tomorrow I will head out with Bilbo and the dwarves for the Lonely Mountain. Because there are always adventures to be had in Middle Earth.

Now please excuse me; I have to attend an Unexpected Party at the home of Mr. Bilbo Baggins!

(Anyone interested in the walk can find the website here: home.insightbb.com/~eowynchallenge/W
alk/walk.html
)

(Also, there is a Walk to Rivendell Spark team, too.)

  
  Member Comments About This Blog Post:

SIMPLYABUNDANT 3/15/2014 10:16AM

    Congratulations on your awesome accomplishment!

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DISCIPLINE1962 3/15/2014 7:41AM

    This is so cool! I'm not a Lord of the Rings person, but what an amazing way to make exercise an adventure. My husband likes the Lord of the Rings so I'm aware of a lot of it - the characters, etc. and we have all the movies, so I've seen parts of those. I keep saying I'm going to sit down and have a movie marathon sometime.

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Lori

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DOGLADY13 3/14/2014 10:19PM

    My mother-in-law would have loved this.

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NATPLUMMER 3/14/2014 7:38PM

    Awesome!

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SIMPLELIFE4REAL 3/14/2014 5:40PM

    Awesome! That is a big accomplishment!

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THOMS1 3/14/2014 4:50PM

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Self-deception for fun and profit

Thursday, March 13, 2014

Yesterday's weather was abysmal. All the schools around us were closed because snow was ... not so much falling as being hurled vertically across the landscape like tiny ice bullets. The wind velocity combined with this punishing precipitation inspired me not so much to go to the gym as to climb back into bed, pull the covers over my head, and refuse to come out until April.

Plus, it was a swimming day. Which meant getting WET in a non-home location. It just sounded terrible.

So I promised myself that I could just go to the rec center, climb in the hot tub, and marinate for half an hour. After all, I only committed to going TO the gym every day. Not to working out every day.

Of course I was lying to myself. I knew that when I got there, I would at least get into the pool first and paddle a couple leisurely laps.

That was also a lie. I went, and I swam a mile freestyle, then an additional 5 laps of backstroke just to finish out the hour. Then I finally went and sat in the hot tub for a little while.

It's useful, at times of low motivation, to break things down into baby steps and to tell ourselves that we only have to do the first step. Right now my kitchen is a mess, and I'm telling myself that when I finish this entry I only have to put the dishes in the sink into the dishwasher and start it. Nothing else.

Sometimes we really do just complete that one baby step. There may well be a day when I go to the gym and just get in the hot tub because I really need a day off. But most of the time, it's just a little lie, coaxing us on to the next part of what feels like an overwhelming task. Just one mile on the bike, just one time around the track, just one load of laundry, just one errand.

And with a little luck, we will finish the day feeling quite smug about all the things we lied ourselves into accomplishing.

  
  Member Comments About This Blog Post:

MANDYLOVE_76 3/14/2014 1:47PM

    Great job and getting it done!

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DISCIPLINE1962 3/13/2014 10:51PM

    I love psychology....isn't it funny how we have to manipulate ourselves into doing the things we want to do? Sometimes I just have to shake my head at the things I have to do to get myself to do stuff. As if I'm someone else - a two year old or something.

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Sounds like you did awesomely.

Lori

Comment edited on: 3/13/2014 10:51:54 PM

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DOGLADY13 3/13/2014 10:34PM

    I do that all the time. It usually works.

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LILYDOG11 3/13/2014 6:29PM

    The initial Spark is the most important step.

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HILLSLUG98239 3/13/2014 3:40PM

    There are times when you cannot compromise on achieving your immediate goal. But I think those times are few and far between, say, if you're being chased by a cougar that wants to eat you. The rest of the time, we're allowed to listen to our bodies and let our emotions have a say.

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KANSASROSE67 3/13/2014 2:56PM

    My trick is to tell myself "I'm just going to do chores for 30 minutes and see how much I can get done within that time." If I really work hard for a short time, I can get a lot done and then reward myself with something I enjoy.

Good blog!

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GARDENQE2 3/13/2014 12:40PM

    I lie to myself as well...it's about the only way I can convince myself to do housework!
I'd much rather go outside and play! emoticon

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NATPLUMMER 3/13/2014 11:23AM

    Excellent!

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WILSHAR7 3/13/2014 11:10AM

    That was funny! Did you get back into bed and pull the covers over your head? Marinating in the hot tub sounds sooo good! I'll join you! Why would you go to the gym and NOT work out? The pool is a good workout. There's nothing wrong with baby steps! All those "JUST ONES" will lead to more later on.
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