Thursday, November 29, 2007

Running on Empty, But Running

My endorphins are flowing today. I feel truly mellow, and here's the reason why: my doctor said I could start running again. Wasting no time, or very little, I donned my jogging togs this morning and ran a whopping .6 miles, or 1k as I prefer to call it. Obviously, I survived.

Wait, it gets better. The doctor also said I could have fried eggs over-easy. Since my transplant, I've only been able to eat rubberized scrambled eggs or hard-boiled ones. No runny yolks to wipe up with my toast due to possible salmonella poisoning. Harry suggested we have a fried egg party last night, but I managed to hold off until this morning, after my petit jog. Just to be safe, I washed the shell (that's right, I only had one egg--I don't want to throw all caution to the wind) with anti-bacterial soap before cracking it open, since it's the shell that possibly harbors the nasty microbes. Naturally, this is an extremely delicate operation, and works better with brown eggs due to their slightly tougher shells. Do I need to tell you my breakfast was delicious?

But wait, there's more. My Raynaud's Syndrome is now cured! For those of you who've never heard of Raynaud's, it's a circulatory problem that prevents blood from flowing to fingers and toes, causing these extremities to turn white, blue or red. Pain's not far behind, although in my case it was more of an annoying discomfort than actual pain. Raynaud's is thought to be an auto-immune issue, so it's not my new blood that's worked the cure, but my new immune system. As weak as it is, it's somebody else's, and that person doesn't have Raynaud's. Wonders never cease with this transplant business.

That's the good news, along with the fact that my bloodwork continues to shine. In the less-than-exciting-news category, my doctor says I must still remain sequestered for a long time. I was hoping that after I reached the 100-day milestone (on December 16, but who's counting?) I might be able to relax some of the strictures placed on socializing. This is not to be. An outdoor barbeque might be okay, but that's not going to be possible any time soon. My doctor advised that I avoid groups of people indoors, and I plan to follow his advice because I've followed it to the letter so far (except for those bagels and slice of imported swiss) and not been sick. He said there's always next year.

Next year. I like the sound of that.

Monday, November 26, 2007

Monday, Monday

I'm sooooo tired. Why? Most likely because I overdid it this weekend, although my lack of an immune system naturally makes me think of something more sinister. That's a good thing, though, worrying about my fragile health. Sometimes, I feel so good I forget I had a transplant 80 days ago. While this may be beneficial psychologically, it makes me take risks I'm not even aware of taking.

Acceptable reasons to be tired:
It's Monday, and the sky is grey.
I cooked a traditional Thanksgiving dinner.
I went to the Nike Team Regionals X-C meet and (shoot me) did too much running, hill-climbing, screaming.
While the rest of the crew raked leaves, I did laundry and made beds.
Woke up at 4:30 this morning.

Fear mongering:
I was exposed to something and will soon sicken.
I ate a slice of unpasteurized cheese (and other food lapses). Woops.
Over-exercising further weakened my immune system.

Now that all is quiet again, now that I am completely and utterly alone (until 2:30!), maybe I'll relax, take a nap, do nothing. Yeah, right, me do nothing. You should see my list. I'm even thinking about returning to work (if I can do it at home). Maybe I should think about that a little more ... .

Disclaimer: If my doctors or other medical personnel read this, I was only joking about the cooking, running, house-working, forbidden food eating. I spent the last 4 days knitting and reading. Really.

Thursday, November 22, 2007

Alice's Restaurant

A long-standing Thanksgiving tradition in my family is listening to Arlo Guthrie sing "Alice's Restaurant." Growing up in the New York City area, my brothers and I used to listen to it every Thanksgiving morning on the now-defunct (format-wise) radio station WNEW. My husband and I didn't think we'd hear it on the radio when we lived in Costa Rica, but a check of the English-language station proved us wrong. We were able to continue the tradition, exposing our children to a little bit of ancient musical history: a protest song from the Vietnam War era.

Now we live in Rhode Island, and it seems every Thanksgiving we have to scramble to find the song on the airwaves. We never remember which station plays it; I suspect more than one does. So this morning, my husband was on-line trying to see if it he could find it on the playlists of various stations when I decided to turn on the radio to see if any of the likely stations might announce plans to play it. I pushed the button, and there it was, about 3-4 minutes into the song. Arlo and Company had been arrested for littering and were making a court appearance before a blind judge. After the song was over, the DJ announced that it could be heard again at noon. This time, the whole family listened: we were a movement!

Today is +76 post-transplant. I went to clinic yesterday in Boston and discussed real estate taxes with my doctor. I have no symptoms, I am doing better than anyone (including myself) expected and my blood counts are all great, so we have to find something to talk about for 5 minutes. For this, among other things, I give thanks.

The turkey's in the oven, the apple pie's baked and we just came back from a walk in unusually mild weather. I'm thinking about egg nog, booze-free of course.

It's good to be here.

Monday, November 19, 2007

Got Inspiration?

What inspires you?

I received an award Saturday night (not in person, because my fragile immune system wouldn't allow me to be in a room with so many people) that suggests I helped motivate the East Greenwich High School Cross Country team in its journey to the RI State Championship (and beyond). I'm of course honored and humbled to have this recognition, but come on, if not for the XC team, I wouldn't have left the hospital as soon as I did. Nor would I have had so much health-inducing fresh air and exercise, if not for the meets I attended. Inspiration is a two-way street, I guess. Watching those boys in their determination to be the best would inspire anyone: training since June no matter the weather conditions; getting up early even on Saturdays to run; putting the team's goal above personal ambition; running, running, running. If you're not a runner, you've no idea what kind of discipline it takes. Someone once said: life is short, but running makes it long. So thanks guys for the award, but more importantly, for your dedication, grit and success--an inspiration to us all.

When I think back to the day I left the hospital and went straight to the Davy v. Goliath meet against a school that almost never loses in any sport, I'm amazed at how far I've progressed. That was 17 days post-transplant; today is Day +73. I can't say I have all my energy back, because I don't. Some days are better than others but lucky for me, to be alone and palely loitering is not a threatening or depressing state. I enjoy the peace and quiet. I fill the time reading, writing, knitting, walking, thinking, managing household affairs. Napping (deserves its own sentence). If I am enthralled to anything, it's my illness/recovery, my personal belle dame sans merci.

Which reminds me how much I rely upon the Leukemia & Lymphoma Society's Discussion Boards for information and inspiration. It's a place I can go and hang with others who have (or take care of people who have) life-threatening blood disorders. Many of those posting have had transplants and are at various stages of recovery. Some are long-term survivors. Some of the stories are unbelievably sad; but many are hopeful, inspiring and even at times, funny.

Inspire or be inspired. Either way, you win.

Thursday, November 15, 2007

No News of Note

Skimming an article yesterday entitled something like "10 ways to a better blog" put me in mind of similar articles ticking off ways to enhance your sex life, your skin, your food, or whatever. One recommendation was to post every day. Every day? Even if you have nothing to say? Apparently, there are bloggers out there who do so. I promise you, I will only post when I have something to say relating to my health. If I were to use this blog as a soapbox, you'd all be sorry. I've been known to rant.

As my title so clearly (and alliteratively) suggests, I don't have much to report. But now that I'm writing, I can't resist the urge to go on. Forgive me, oh Editor of the Infinite Blogosphere, for tossing in a few more needless words.

Tomorrow will be 10 weeks since I had the transplant. I am still standing, and walking, and doing a lot of things, some allowable, some not. My blood counts are good, although the pesky white count bounces around a lot which I attribute to those little boys having fun in my marrow. I've actually felt almost completely normal, and do forget sometimes that I'm supposed to be on high alert 24/7. So far, my lapses haven't made me sick, for which I am grateful.

One symptom I've noticed lately is that I seem to be clairvoyant, something I don't even believe in. Does having someone else's blood coursing through your veins boost the so-called sixth sense? I will make further observations on this unnerving phenomena and get back to you. There, you see how silly blogging can be when you have little to say.

Monday, November 12, 2007

News Briefs from the Knit-Wit

The blahs have been banished, possibly because my weekend was so busy I didn't have time to pay undue attention to my body's efforts to unravel my mind. On Friday, I started two projects: recovering the kitchen chairs and knitting a sweater. As for the chairs, I got as far as removing one seat, measuring it, estimating how much fabric to buy and buying the fabric. And if that wasn't excitement enough, my friend Patty gave me a long-awaited knitting lesson. Sometime over the summer, we'd picked out a pattern, and Patty donated yarn to the project and knitted a sample to check the gauge. Two and a half months and a transplant later, I finally got started. Patty spent a couple of hours demonstrating the various stitches and techniques, which I thought I understood. Wrong. Like the (Greek?) goddess who knits and unknits time, I spent Friday and Saturday knitting and unknitting and reknitting. In theory, I'm knitting myself a sweater, starting with the back. Maybe I'll just knit a placemat.

Another interesting thing that happened Friday was that my doctor decided to decrease my immunosuppressant drugs based on their levels in my blood. What I don't know is whether this decrease (which is sizable) is the start of the tapering of these drugs that usually begins around 100 days post-transplant. I'm only 66 days post, so it's early for that. I'll ask the doctor when I see him this week. One of the issues with tapering the immunos is that graft versus host issues can start rearing their ugly heads. In other words, the new white blood cells (graft) could start picking on my organs (host). On the positive side, my immune system, currently as effective as a 2-month old's, can begin to rebuild.

Saturday's blah-chasing event was our trip up to Maine to watch the East Greenwich HS Cross Country team compete in the New England Championship race. Ranked 4th, they ended up placing 2nd by one point. Mark ran a great race and placed 14th out of a field of over 250 runners. On a personal note, due to the cold weather and my being bundled under many layers, you couldn't tell I was bald and wearing a surgical mask.

Sunday I spent reading the New York Times and knitting. Whereas I finished the Times, the knitting never ends.

Thursday, November 8, 2007

The Blahg

I'm feeling blah today. Nothing serious. A little nausea. I think I've been dehydrated, so I'm trying to up my liquid intake. Yesterday was my weekly clinic visit at Dana Farber. My CBC looks very good. I am now in the normal range for white blood cells and platelets. The meeting with my doctor was brief, since there was nothing to discuss--a good thing. Instead of blah-blah-blahing, I'm going to keep this post brief, too.

Tuesday, November 6, 2007

Still Paying the Piper

Usually after 8 hours of sleep I wake up raring to go downstairs and make those PB&J's for the boys' lunch. After I've brewed some Costa Rican coffee, of course. Today was different. I felt queasy. I felt like pulling the covers back over my head and sleeping some more, if only to ignore the blahness. But get up I did, because that's what mothers do, even mothers 60 days out from transplant. The problem with feeling good is that you tend to do more than you should. I am notorious for overdoing, and Sunday I pushed the envelope. Now I'm paying for it.

The weather isn't helping. It's cold and dark and rainy, and the leaves keep pouring down. Leaves I want to rake but can't. Normally, I'd take a morning walk, but that's out due to the conditions. I could work on some writing projects. I'm almost tempted to turn on the TV and watch whatever garbage they're churning out. I could continuing reading "Return of the Native." Decisions, decisions. I think I'll go downstairs and curl up with Turbo and Asta and snore the day away, dream about chasing rabbits. That would of course be illegal because I can't have direct "contact" with the dogs. But it sounds so cozy.

Tomorrow's clinic day in Boston. I have no symptoms to report (the blahs is not a symptom) so it should be a quick visit to the doctor to discuss my labs. I'll post the results on Thursday.

Have a politically satisfying Election Day. I'm pretty sure they cancelled it here because there's nothing to vote for.

Monday, November 5, 2007

Wanted: Sleep

I'm sooooo tired today, but I know the reason. Or I think I do. No, I'm not worried I have an infection lurking, that my graft is failing, that I sucked in a mold spore that's about to turn my body into a fungus factory. Those are just a few of the run-of-the-mill worries I live with day-to-day. This morning I feel as though I ran a marathon yesterday, or at the very least a 5K. I wish I could say I had. (Some day ...)

Physically, I did a lot of standing, about 1.5 hours outside and another 45 minutes inside. I also did a fair amount of walking, maybe a mile or more. Then, there was the jumping up and down, screaming and clapping which sucked the rest of the energy out of me. Emotionally, I was nervous, excited, overwhelmed by happiness, and my eyes even teared up at one point.

No, I did not go to Wal-Mart to purchase the $199 computer that's really an Etch-a-Sketch taped to a toaster over. I went to see the East Greenwich Boys Cross Country Team become first-ever State Champions. I watched Mark come in 6th with a time of 16:16.7. I hovered at the door of the gym sneaking peaks at the awards presentation, trying to stay out of harm's way. East Greenwich High School, one of the smallest schools in the Rhode Island, State Champs! That's when I became a bit teary. Of course, at that point, I was completely exhausted. Exhausted and proud. Happy that I was there, witnessing that special moment.

Thursday, November 1, 2007

Halloween Horror: CSI East Greenwich

Sketchy reports continue to trickle in regarding the possible homicide that may have occurred in bucolic East Greenwich, Rhode Island on, of all days, Halloween. No body has been discovered so far, only the tattered remains of a bloody Boston Red Sox sweatshirt. A spokesperson for the Boston Police Department confirms that 7 persons last seen at this week's World Series celebration have indeed gone missing. Signs of an epic struggle, including blood and chocolate smeared on a white tile floor, were discovered at the scene, a colonial-style house on sleepy Moosehorn Road. All five residents of the house were interviewed by police detectives, and four of the five have solid alibis placing them in other locations during the estimated time of the alleged attack, although all admit to being NY Yankees fans. Only the Lady of the House, a veritable recluse due to a recent medical procedure, was home all day. She claims she didn't hear a thing, spending the morning in the upstairs office writing her blog, and then taking a long nap. Preliminary DNA analysis of the blood indicates it came from two unrelated males. Police hypothesize that a home invasion might have taken place, and that the two intruders got into a fight, possibly over Kit Kat bars. This is of course pure speculation and cannot be confirmed at this time.

The Lady did it. In fact, the notion of getting away with murder has long intrigued this (so-called) woman. It was her oncologist (a Red Sox fan, by the way) who planted the seeds for the dastardly deed during her recent visit to him in Boston. It seems that her double umbilical cord blood transplant has created an unusual (some would say freaky) situation in her blood. Since both cords came from boys, and recent bloodwork shows none of her own blood exists any more, she has 100% male blood. Just think, her doctor said. You could murder someone, and if you struggled with your victim, and if you bled, you would be ruled out as a suspect because you're female!

Readers, it's really true. Not the murder of course, but the fact that the blood in my veins is now male. Harry asked me if I have a strong urge to chop wood. I have been having strong urges NOT to do any domestic chores, and for the most part, I haven't done any since they're forbidden by my condition. Now we know what my "condition" is. I have manly blood.

Wait, there's more. Two weeks ago, my blood was 66% cord #2 (which hailed from Colorado) and 33% cord #1 (from Down Under). There was still 1% me in there. Well, it seems the Colorado blood has cooled off and is now tanking, just like the Rockies. The score is now 55% Colorado, 45% Australia. Can the Aussie make a comeback and win?

Ripley's Believe It or Not just called ...