Archive for June, 2007

A Conversation with Sara

Apologies in advance to anyone for whom this qualifies as “sickeningly sweet”. That said, this is my blog and I’ll make an even bigger geek out of myself if I want to.

Here is a videotaped conversation with Sara (YouTube) that I had on the morning of Tuesday, June 26, 2007. She was in her characteristic happy and talkative morning mood, and I fired up my camera to record our conversation. Apologies for the poor framing/camera angle. I have no illusions of being a film-maker, and if I hold the camera Sara looks intently at it instead of getting engrossed in talking to me directly so I just placed it on my bedside table and hoped for the best. The end result is some great audio and some questionable quality video of Sara’s feet. LOL! I left it as a video file, however, because you can see her little feet and legs go nuts as she gets excited at various points in our chat.

More of these will be coming in the future, since Sara has entered into a much more talkative and entertaining phase.

And, for a walk down memory lane, you can also check out the ultrasound video I created back in Novbember 2006. I still need to put the final (26 weeks gestation) ultrasound to music, but it was such a quick ultrasound (to verify the location of my placenta), it’s not nearly as compelling.

Enjoy!

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Miles Levin’s Story

Miles Levin is an 18-year-old with Stage IV cancer (alveolar rhabdomyosarcoma, a rare soft tissue cancer) that will quite likely steal his life before the end of the year. In truth, he was not expected to survive to reach his high school prom, much less graduate, two milestones which he has thankfully achieved recently.

I’m quoting his latest entry because it touched me, but if you’d like to read more from him and his parents, create a free account at the hospital’s website (CarePages) to read his other entries. He makes you realize how precious each day is, and how petty some of our day-to-day “problems” (even horrific traffic or a bad day at the office) are when others don’t know how many more hours they have on this Earth.

— Quoted from Miles Levin’s blog —

June 26, 2007 at 02:08 PM EDTThank you for the fascinating, varied, and heartwarming responses. I have some unfortunate news. It appears that my chemotherapy is no longer effective in containing the growth of my cancer. We knew this day would come from the moment I resumed chemotherapy treatment in March; the response for relapsed Stage IV rhabdomyosarcoma is ineludibly temporary. I’m flying to New York on July 5th for scans and most probably some form of investigational treatment (there are no other chemotherapy options left). We’re buying one-way tickets.My mom told me today that I don’t need to go ahead with any more treatment if I don’t want to. I want to. Mainly because life is the most breathtakingly amazing thing I could ever imagine. If I can get more of it, even just a couple more days or weeks or months, I’ll fight pretty hard for that. It’s not that I have a particularly high opinion of human or universal nature. While there is much good in the world, I see plenty of cruelty and abhorrence, but the stunning beauty and mystery of the experience in all its breadth and glory so profoundly surpasses words that I’m just going to shut up and move on to the next paragraph.When Dr. Wexler told me I’d relapsed, so much hope collapsed in that instant that I asked him why bother resuming toxic chemotherapy simply to buy me more time. At my Cranbrook graduation, he looked me in the eye and said, “This is why bother.” Dr. Wexler, this is the part where I admit that I was wrong and you were right.I will fight to the bitter end. However, we must stop struggling. It is all but a certainty that I will never be cured of rhabdomyosarcoma. It is possible that I will die within weeks, and very probably within the coming months. Please don’t tell me about someone you know who defied the odds; I’m aware people have. I hope to. But I’m not counting on it.Keep fighting; stop struggling. Because as long as we are feeling at least physically and mentally decent, we will never want to leave. There will always be things we’ll wish we could do or could have done differently. One day, written on the calendar in invisible ink, you will die. When that future date becomes today, I guarantee you’ll wonder how the hell that happened. But once you accept it as part of the territory, it doesn’t sting quite as bad.

I feel relatively ready. I’m proud of myself, proud of my life, and most proud of the story of my life. I say the story because it includes everybody in it and all the goodness the has transpired, the courage displayed by my family, the generosity of people like Bob Woodruff to have reached into my life—a busy and important man finding the time to call me from Syria during my chemo week. I am proud of the people my friends have become. They’ve grown so tall. I am most proud of myself (to answer the question) for my seeming ability to bring out the best in those around me wherever I may go. What I’ve done, I believe, is what I’ve been sent here to do.

Something has shifted. Everything is okay now. It’s okay because I am okay with it. The goodness that my having and dying from cancer creates in the lives of so many thousands of people overshadows and outweighs any personal bad. I’m in escalating pain from the tumors but I hardly mind. You know why?

This is my story and it’s not meant to be told any other way.

All good things must end. When they do, sadness is unavoidable. This is one of the core reasons why Buddhists believe life is suffering. Take a romantic relationship, for example. While it can bring temporary happiness, the end is inevitable and so is the suffering. So monks are celibate. They’re totally right too. Love hurts. But there’s a “but,” and it is this: it’s worth it.

Whatever it is, it’s going to end, and when it does, if you can say, “I enjoyed that,” that’s as much as you can be given (the sorrow comes standard), so let that be enough.

Every rose has thorns. —

More of Miles’ heartfelt entries are posted here, on his CarePage hosted by his “home” hospital. You just need to create a free login to read them.

Miles’ story has been featured by CNN’s Anderson Cooper, and the brain-injured (now recovered) ABC reporter Bob Woodruff (he was gravely injured by an IED while reporting in Iraq) spoke at Miles’ high school graduation.

Other articles:

If you pray, or have positive energies to send, Miles and his family most certainly are deserving of the minimal time and effort required to send some good their way.

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A Little Routine, A Little Not-So

Today was a study in contrasts. I resumed a bit of the routine, welcoming my parents back late this evening from their week-long Alaskan cruise and visiting with my brother who had the day off from work.

The not-so-routine included Justin having taken off from work today (he had hoped to fly, but the weather was not amenable to that) and seeing my first movie at a theatre since I was roughly 8 months pregnant. Seeing a movie when you’re exclusively breastfeeding is a little challenging, even if you aren’t comfortable nursing in public (which I sadly am not, even though it is my right to do so discreetly.) In our case, a movie date means leaving Sara with Grandma and Grandpa Moore for about 3 hours, accompanied by multiple bottles of frozen breastmilk, instructions on how to thaw it, and gentle admonitions to not thaw too many bottles, else some will invariably be wasted because the milk cannot be refrozen. It also means physical discomfort because the lactating mother’s body is used to feeding her little one at certain frequency, and when that milk isn’t removed from the breast through nursing or pumping it leads to painful engorgement. So, I literally cannot be away from Sara or a breastpump for more than about 3 hours without physical ramifications, and if you don’t remove that milk your body takes it as a sign to reduce your milk supply. (Lactation is really an amazing biological process, and has really made me appreciate just how adapted women’s bodies are to growing and sustaining a child from conception to toddlerhood.)

I’m not a major milk producer by any means, so pumped breastmilk is sort of like liquid gold around here. I’m convinced the saying about “crying over spilled milk” had nothing to do with cow’s milk, and was in fact coined by a lactating female who’d just spilled her precious breastmilk, rendering it useless. Anyway, we took Sara to Justin’s parents’ house near our home after a bit of a panic trying to find jumper cables to rescue my brother stranded about 20+ minutes from us (couldn’t find them; I think I must have left them in my old 1992 Toyota Corolla when we sold it.) We arrived at Grandma and Grandpa Moore’s house harried and with just enough time to show them everything we had brought that they might need, including the three 4 oz. bottles of frozen breastmilk… better to have too much food than too little! It takes me a full day of multiple pumping sessions in between nursing Sara to get just 4 oz. of breastmilk, so you can imagine how nutty one might be at the prospect of using up three 4 oz. bottles of mother’s milk just to see a feature length movie. Thankfully, Sara only required one bottle while we were at the movie, and she was a wonderful baby as always. It did feel good to share a feature length movie with Justin again after all this time (appropriately, we saw “Knocked Up!”) but it was also very good getting back and seeing Sara again. We missed her over the 3 hours we were away, and both sung our praises that I am able to stay home with her so we haven’t had to endure the awkward transition to daycare for a newborn.

I’m a little punchy since Sara and I got home quite late from welcoming Mom and Dad back home. It’s 1:32 AM and I’ll re-read this tomorrow and see if any of it even makes sense!

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Blah Blah Blah…

I’ve got nothing to post, but am posting anyway. We had a productive, busy weekend but didn’t get around to taking 3 month or Father’s Day photos of Sara. Soon, I hope. We’re also overdue on giving her a bath, but she is on Day #3 of her growth spurt and the accompanying piranha-like feeding frenzy that I had almost forgotten about from 3 weeks, 6 weeks, 9 weeks, etc. By the time she is even remotely ready for anything other than feeding, it’s 11:30 PM or like tonight, 12:30 AM. Tomorrow will definitely be a bath day because sponge baths only go so far when you’ve got a drool and spit-up machine (albeit a very cute, endearing one!)

I also still need to post my GPS track data from last weekend’s ride. Justin keeps reminding me, since he’s anxious to see the heartrate data on it. My heartrate strap’s batteries died on our first bike ride, so the data is much-anticipated… but it’s not going to get online until I manage to mate my GPS unit, a USB cable and my laptop together, and have Internet access (lately, the latter has been the quantity in short supply.)

Mom and Dad (mine, not Justin and I in the third person) are about midway through their Alaskan cruise to celebrate their 40th wedding anniversary. Check out my Mom’s still-growing entry chronicling their cruise — BlackburnDigest.com: Alaska Cruise ’07.

Sara’s doing wonderfully, and continues to be a very easy baby (apart from the feeding frenzies of growth spurts). What with the hot Texas summer weather, we’ve missed our opportunity to take her on a camping trip — something Justin and I were really looking forward to pulling off. Sara enjoys the outdoors and I try to get her out for short, livable bursts as much as possible — checking out all the plants in her grandma’s backyard (my Mom’s the green thumb), coming along with me to check the mail or drop off a letter/Netflix in the mailbox, etc. We haven’t been doing much hiking/walking or stroller walking lately, but the heat hasn’t curtailed that so much as our sleep/wake schedule has — we aren’t usually up and ready (fed, dressed) to go before 9 AM, and any later it proves too hot to be worth attempting. I can’t wait until Fall!

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Sniffle

So, I was a little late getting the photos posted to Flickr. I blame Time Warner… our Internet access keeps going out, only to come back up just as unpredictably as it dies.

Anyway, after posting some of our more recent shots (we need to take more, bear with us!), I started looking at some of our older shots and… man, that’s hard! Day-to-day, we already notice how quickly Sara is growing and developing, but looking at photos taken during her first month of life? OUCH… right to my heartstrings, every time!

Sara turned exactly 3 months old today!

Looking back… a photo from April 4, 2007:
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This is where I turn into a quivering mess of tears… I cannot believe Sara was this small, nor how quickly she has grown and by how much in just 3 months’ time. In some ways I miss my “little girl” and yet I celebrate all that she becomes with each passing day.So that is the grand conundrum of parenthood. I finally get it!

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Watch This Space

I’ll be posting a half dozen or so new Sara photos to my Flickr.com account later today, as well as GPS track data from last Sunday’s 7-mile bicycle ride that Justin and I did in Hollywood Park. I’m on the verge of buying a road bike soon (God help me… four bicycles in our already crowded 2-car garage?!)

I think I also have one or two cute video clips of Sara to share.

Patience, grasshopper, patience …

Also, it won’t happen today, but watch this space for a heads up on some of the used geek gear I’ll be auctioning off on eBay soon.

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