April, 2009

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Thursday, April 30th, 2009

Hello there!

Well, I’m sitting here watching a little “Law and Order”, thinking about my trip to Seattle.  I plan on trying to get another free flight for myself and one other person (either Laura, the giver, or my mom, the nurse…maybe I should put it to a vote!).  I thought this was a nice video, if you want to check it out: http://corpangelnetwork.org/.  Pass it on to patients and possible corporations that might want to participate!!

Check out my new favorite song:  http://www.youtube.com/watch?v=xRXhDQXhdXE …so, I’m a little behind–I’ve never heard it before!!  Makes me wish I were a Jersey girl.  :)  You know,  I think I may be a Bruce Springsteen fan, and I don’t even know it!  I’ve only ever heard “Born in the USA” and now “Jersey Girl”.  That’s a good CD they made for your shower, Kristi!!   How perfect, considering you are a Jersey girl.  Does anyone know if  there are any songs about Virginia girls?  Just curious.

So, all is well here.  I’m avoiding most public places because of the measles/swine flu cases.  Speaking of, I have a question.  Why is everyone so worried about swine flu?  I realize that there have been deaths in Mexico, and that one child died in Texas, but from everything I’ve heard and read, they say “all symptoms are like typical flu symptoms.  Stay at home and treat your symptoms.”  Are people scared simply because it is so easily transmitted?  What happened to the measles?  They just stopped talking about it once swine flu came onto the scene.

I do plan on going to my friend, Henry’s, 40th birthday/citizenship party this weekend.  I’m really looking forward to it!!  I guess it probably sounds silly to you to think that I’m avoiding other places, yet I went to a wedding, and I’m going to this party.  Well, I got permission for the wedding (although that was before we knew anything about the swine flu, and I asked before the measles cases were discovered), and I figured there wasn’t much of a difference between attending the wedding and going to the party.  I’ve also thought about wearing a mask on Saturday, but it seems everyone agrees that masks don’t really do too much to protect you from catching a virus.  I will just refrain from doing a lot of hugging and handshaking, and be careful to constantly wash my hands (and to, of course, keep my hands away from my mouth/eyes/nose).  In addition, I still take Acyclovir, which is an anti-viral medication, and I think it gives me a little bit of protection.

Speaking of public places, I went to the VW dealership yesterday so they could do inspection and emissions on my dad’s car.  I love going to VW.  First of all, it’s a very clean facility, and it’s never crowded.  I have my own table, I can use free WiFi, they have a delicious free French capuccino machine (well, it has all kinds of coffee, but my fave is the French capuccino), and they used to have donuts from “Dunkin’ Donuts” (but no more because the store across the street recently closed :( ).  I get so much accomplished there, so I’m never too upset if they say it will take them more time.  Honestly, I wish I could just go hang out there like someone would a Starbucks or Border’s.  Do you think they would find that strange?  :)  Not only are VW’s the best cars out there, but the dealership is a fun place to hang!!!  What more can you ask for?  I was disappointed yesterday because I was in the zone, getting lots of stuff done, when they came up to tell me the car was ready.  Secretly I thought, “you mean, there’s nothing else you need to work on”?  The man actually said to me (sarcastically…he had no idea how much I loved being there!), “So, are you ready to get outta here, or do you want to hang out a little longer?”.  I almost answered, “Nah, I’ll stay a while longer…I’d love to finish my e-mails and enjoy my third cup of coffee…can you just park my car in the lot for a while?”.

I know what I need to share with you…there is a new little foal in our neighborhood!  I haven’t seen him yet, but I hear he’s adorable.  I learned that it’s good that the weather is kind of cloudy for a few days, because foals’ eyes are very sensitive to bright light.  Also, the labor lasted about five minutes…not bad, right?  I’m looking forward to seeing some photos (or maybe meeting him in person!!).

I hope everyone is doing well!  It sure is gorgeous here in Virginia right now…bright green everywhere, all colors of azaleas, dogwoods and other blooms.  I just can’t imagine living somewhere that doesn’t have seasons…I love watching the changes that take place from one day to the next.

I’m off to enjoy the HGTV channel (yah, I’ve switched from “Law and Order”).  Enjoy your weekend!

Lots of love,

Reflections on a special weekend.

Tuesday, April 28th, 2009

Hi there everyone!

Well, you might as well settle in there, folks, ’cause it’s ‘gonna be a long one!!!!!  I’ve had a busy week.  I went hiking Thursday with Laura and the dogs, I attended Paloma and Tony’s wedding Saturday, and Sunday afternoon I visited with Rachel, a friend I haven’t seen since high school.  Later in the evening I hung out with Maya and Brant.  It felt good to be so busy!  A social butterfly, that’s me!!  :)

Let’s start with the hike…perhaps you want to ask Laura about how it went, because she has a very entertaining way of describing it.  It was, as you can see from the photos, a goooorgeous day.  We  took Jameson, Guinness and Indie, buckled them into their backpacks and set out on the path.  It was marked blue for “easy”.  Well, let me just warn you, WHITE OAK CANYON IS NOT AN EASY HIKE!!!!!  Check out the description here:  http://www.hikingupward.com/SNP/WhiteOak/.  Laura, I’m pretty convinced that we did the longer, more difficult hike that starts at the bottom of the mountain.  There were definitely creek crossings without a bridge (I slipped on one of the rocks while crossing and fell, soaking both shoes and my right lower leg–again, see photos!).  By the way, Laura also fell, but she fell on dry land.  OK, let’s be fair…there were lots of rocks on this trail.  In fact, let me tell you a little more about all these rocks (or you can contact Laura for a more lively version).  They were everywhere, both small and large.  Now, my hiking boots are old (or shall I say they were old, because I threw them away the minute we got home!), and I discovered on this hike that they were not so supportive anymore.  My ankles kept rolling to the sides as I tried to navigate the path.  I don’t mind hills, but when the switchbacks started feeling more like rock climbing, I admit I got a little cranky.  I did my best to hold it in, but I just couldn’t do it anymore!  Laura and I turned around once I realized we still had a ways to go to get to the other falls, because I didn’t think my body was willing to push any further.  We turned around, and I just let it all out:  “Why are there so many (”bleepin’”) rocks (only, I didn’t say “bleepin’”, obviously!); “Don’t you think there are a lot of rocks?”; “These dog leashes keep getting tangled!!”; “Did you honestly think I could walk 10 miles?”; “I don’t think I could do this even before the bone marrow transplant!”; “How is that older lady able to hike this?”.  But I didn’t want to hurt Laura’s feelings, so I mixed those comments in with “It really is beautiful here though” and “I really do like this hike, I’m just not totally prepared”.  When Laura describes it, she uses special story-telling voices that make me sound like a schizo.  It’s pretty funny though, I admit!!!  It was especially funny once I fell in the water.  I would like to take this moment to say that I will not be hiking Old Rag in June.  I think I will push that off until the fall, because I am absolutely not in shape for Old Rag, and it will take time.  I hope those who wanted to join me in June still want to go!!  My new goal is to make it through White Oak Canyon.  Here’s the plan:  new hiking boots, a walking stick or pole and a third person to help walk the dogs (and perhaps some stair climbing training!).

The dogs and I fell asleep on the ride back to Laura’s house (thanks for driving, Laura!).  Before getting home though, Laura made a stop at McDonald’s to get the dogs some plain burgers.  They were gone in ten seconds, and I am not exaggerating!!  Laura and I got ourselves some delicious BBQ from a tiny place in Haymarket (I can’t remember the name).  When we got home, we celebrated by having cider—that’s right!–my first cider in almost a year!  It was extremely refreshing.  Hiking and beer (or cider, in my case) just go together–not at the same time, mind you, but as a treat after hiking.  I took a picture of my first cider.  :)

Friday night, I got ready for Paloma and Tony’s wedding by trying on outfits to see what fit and what didn’t.  I also painted my toenails, and they turned out quite beautifully if I do say so myself!!  Ronnie, Kathy, Katie, Vlad and Klaus all arrived Friday evening, and we (well, all of us except for Katie, who got home later) ate a delicious rockfish dinner courtesy of Mr. Beha who caught a 46″ rockfish in the Chesapeake Bay Friday afternoon!!  Thank you so much for sharing your fresh catch!  My dad made some sweet potato fries and we had some corn…a delicious impromptu dinner.  My mom even made a chocolate cake!!  Talk about feeling spoiled!  Saturday morning was gorgeous…hot, but gorgeous!  In the early afternoon, I drove out to Lovettesville, VA (not too far from Charles Town, WV) for the wedding.  I enjoyed the drive out there, singing the whole way and taking in the amazing Virginia countryside.

The wedding took place at a bed and breakfast, and it was awesome!!  Paloma looked gorgeous, Tony looked handsome, and it was obvious they were both having a blast.  Paloma, one of my favorite parts was when you and your dad walked “down the aisle” (or “up the hill” :) ).  I love outdoor weddings because the “aisle” is almost always fairly long, and it’s such a special moment for the bride and her father or whoever the special person may be who is walking her down the aisle.  You and your dad seemed to be smiling/laughing the whole way!  And, of course, I loved the fact that your dad said hi to me as you got closer.  :)

Paloma’s aunt made her dress, and it was absolutely perfect.  It was just so you, Paloma!!  There were special touches throughout the ceremony and the reception.  Tony and Paloma released doves during the service that flew in formation, flying back and forth before heading off into the distance.  Each table for dinner was decorated with beautiful mosaics, handmade by Paloma.  In each one, she pieced together the name of a country or city that was special to both Paloma and Tony, and on the back of the menu, they had pictures  of themselves in that city/country and a story of why that place was important to them.  They will use the mosaics as decorations in their home.  I sat at “Guatemala”, there was a “México”, an “Argentina”, and several others.  Paloma and Tony fittingly sat at “Lovettesville”.  For favors, Paloma and her dad put together these really cool mosaic coasters.  There were just so many special touches, and family was central to the celebration.  The dancing was incredible (especially mine!  hahahaha), the people were kind (I loved everyone at my table), I got to meet Maria’s five-day old beautiful baby girl, and I even made it into Paloma’s dad’s speech!  He spoke in Spanish because there were so many relatives from overseas, and one of Tony’s sisters translated into English.  Mr. Corchon thanked everyone for coming, and he added a special thank you to me, saying that I had them worried for a while, but they were so happy to have me there with them.  Thank you again for the “shout out”, Sr. Corchon!!  I was so touched.  And I was verrrry happy to be there!  It was a wonderful celebration of love, family, and friends.  Congratulations, Mr. and Mrs. Borrayo!!!!  :)

But wait, the fun doesn’t end yet!  Sunday afternoon, a friend from elementary and high school came out to visit.  I hadn’t seen Rachel since high school, and I had never met her husband, Mike.  It was so much fun catching up and hearing about what she’s been doing.  Guess what?  She has a cat named Guinness…how funny is that?  We made plans to go to her house for a BBQ in May, and I’m really looking forward to it.

Sunday evening, I ventured out to Centreville to hang out with Maya and Brant.  They prepared a delicious dinner, we chatted, and then they introduced me to “House Hunters”…I think I could get very addicted to that show!!  By the way, my parents liked the yummy coffee jello with whipped cream!  It is deeeeelicious.

In other news, I think the marks on my face have settled down.  I haven’t noticed any new ones surfacing, and the old ones seem to be fading.  I do notice some mouth sores though, so it’s back to salt rinses.  Did I tell you in the last post that I made my appointments for Seattle?  I’m going in late September, and the whole fam is trying to go with me so we can turn it into a vacation.  I’m psyched to have the dates, so now I just need to get the plane fare and hotel.  I am so looking forward to going back out there!!

Unfortunately, yesterday I learned that a friend I’ve met in the cancer treatment process died.  Well, technically, I never met him.  I e-mail back and forth with his fiancée, who I met through Chemoangels.  He was diagnosed with AML last year, and has been actively fighting this disease since that time.  In his obituary, it said that his best friend was his adorable dog (does that sound familiar to you?! :) ).  Paula, I’m thinking about you and your family, and I’m sending lots of love.

I hope someday there will be a leukemia vaccine…there’s a feline leukemia vaccine, after all!  This disease just sucks, and I feel so lucky to be doing well, so lucky that I had Laura to give me “the gift of life”.  I appreciate life every day, and I hope I always have the ability to step back and do just that.  I can’t wait until I can be part of TNT again, so I can help raise funds for more research.

Well, I think that covers everything–for now, anyway!!  Oh wait, I forgot!  Last week when I went to the doc’s office, my hemoglobin and hematocrit were the highest they’ve ever been!!!  12.1 and 34.5…how ’bout that?!!!!  Pretty impressive, don’t you think?!  I’ll go for 14 and 37 next time!!!!

To end, I’ll share another great youtube video Aunt Nancy forwarded to me.  I love this–how cool would it have been to be in that train station?!  http://www.youtube.com/watch?v=7EYAUazLI9k

OK, I hope you enjoy the photos!!

Lots of love,


A Good Week.

Tuesday, April 21st, 2009

Before anything else, you need to listen to my new favorite song: http://www.youtube.com/watch?v=nCW3Qpi56GA…well, it’s new to me, but it’s actually an older song. Now as you read the rest of the post, you can have my most recent personal soundtrack playing in your mind!! Tell me, can you listen to it and not dance? Chichi Peralta is from the Dominican Republic and used to be in Juan Luis Guerra’s band (Paloma, I’ll always be so grateful that you introduced me to JLG!!). Apparently Chichi started playing drums when he built his own at age four!!! Pretty incredible.

I had a wonderful week, as you can see from the many photos below. On Thursday, the day of my last post, I went to see Dr. Orloff to show him the marks on my face. He agreed they didn’t look like pimples, but neither did he think they were evidence of GVHD (which is great!). He suggested I use more lotion because my skin looked dry. I use lotion pretty much every day, and I always apply sunscreen specifically made for the face. I’m not convinced it’s dryness. When I was outside playing with the dogs yesterday, I noticed a couple clouds of gnatty looking bugs, and now I’m wondering if these are bites because I spend a couple hours outside almost every day. Either way, they’re still popping up, and I’ve found other marks on my arms and legs. Typically they go away quickly, but several on my face refuse to do so.

Judy wondered if maybe it could be poison ivy that I may have gotten from petting the dogs and then touching my face. That would certainly make sense! Dr. Orloff told me not to apply a steroidal cream to my face, so the itchiness continues. I don’t want to take a Benadryl during the day because I’ll end up curled up on the couch, asleep.  We’ll see what he says tomorrow when I go in.

By the way, when I wrote about what a wonderful week I had, visiting the doctor is not wonderful in itself, but it is a good reason to get out of the house!  Also, the “wonderful” part of that visit was that he did not think it was GVHD.  After the doctor, I decided to drive down to Georgetown because it was a perfect spring day, and I thought Kathy might enjoy some cupcakes for her birthday.  I’ve heard many a person mention “Georgetown Cupcakes”, so I just had to see for myself just how good they were!  The shop is tiny, and there was a line of customers waiting on the sidewalk in front of the bakery.  It went quite quickly though.  Before I knew it, I was inside, staring at the cupcakes, feeling a little nervous because I wasn’t sure what I wanted…the kind of nervous you may feel in a NY deli if you’re not sure of the menu, and you know they don’t want you asking lots of questions.  Whenever I would visit Ronnie and Kathy in NYC, I would make sure I knew exactly what I wanted before standing in line so I didn’t get yelled at…they don’t take any of that “Hmmm…what do you think I should get?” or “I dunno…I love roast beef, but the smoked turkey looks delicious” crap.  I memorized what I wanted…my worst nightmare would be standing there saying “Umm….ummmm….uh, I don’t know”.  Wow, that was a long aside, wasn’t it?  Anyway, as I was saying, I felt a bit of the NY deli fear while standing inside the shop, so when I was still three people away from the front of the line, I quickly surveyed all the cupcakes, reading the various flavors as fast as I could.   Banana chocolate?  Mmmm…can’t skip that one! Red Velvet, Chocolate, Vanilla, and finally Peanut Butter and chocolate.  I paid and stepped aside.  The next customer asked if they had any Key lime…key lime?  How could I have missed that one?!  Mom would love it!  Oh, good thing, they don’t have any at the moment.  Perhaps next time I should study the flavors in advance.  :)

They were quite delicious HOWEVER all the icings tasted like they had cream cheese…yah, that’s right, I tried at least one of each…what of it?!!!  I would have loved a buttercream icing or plain old chocolate. Oh well…I had a great time going down there for a quick visit, and the cupcakes were gone by the next evening.  I drove home from Georgetown via American University because I love the area so much.  It brings back good grad school memories!

On Saturday morning, Terri, a friend from my young adult support group, came out to visit.  It was great to swap Seattle stories, and chat about anything and everything.  Thanks so much for coming out, Terri (and for the delicious apple, excuse me, Dutch apple bagel)!!  :)  I had a wonderful time chatting, and I hope we can do it again sometime!  Next time I’ll make waffles!!  No matter what you’re talking about, there’s something so comforting in talking to another young cancer patient…it kind of feels like you’re talking in a shorthand, because you’re part of the inner circle in a unique experience.  It was fun to start my day talking to a friend–it seemed to set the tone for the rest of the afternoon.

Speaking of, I walked around Burke Lake for the first time since last year!!  Laura and I took all the dogs out there late Saturday afternoon, and we had a wonderful time.  The dogs got along very well which made us quite happy!  We’re planning a hike on Thursday to White Oak Canyon in the Blue Ridge…good practice for Old Rag, right?  The pups get to partake in that as well, so I know they’ll be pretty darn happy!!!

On Sunday (another gorgeous day!), my mom, Laura and I went to Lisa’s wedding shower.  It was a lot of fun, although it still feels weird sometimes to see all of Laura’s friends (and Laura!) married and having children…she’s only three years younger than I am, but when I think of “Laura and Lisa, the duo”, I automatically picture them as they were in the early years of high school.  I guess what I’m saying is that I feel old!  :)  It was nice to catch up with everyone and to meet some new faces.  Laura and I are ready to dance our butts off at the wedding!  We’ll have to create some special routines between now and August 1.

Well, I’m getting pretty sleepy, so I’m off to bed.  It is 1 am, after all.  By the way, I discovered tonight that I’m really Swedish on the inside.  I took a test on facebook, and apparently I’m Swedish at heart!  Those tests crack me up.  I’m a bit confused though now…it says I’m Swedish, but the other test said I should live in Ireland!  You think they’d match up, wouldn’t ya?  :)

I wish it would rain harder so I can fall asleep to the sound of it.  I’ll just have to put on my sound machine and fake it!

Enjoy the photos–I have lots for you today!!!

Lots of love,


Farewell to Flamenco.

Thursday, April 16th, 2009

Well, to my flamenco dress, that is.  Today I gave it to the George Mason dance department.  Wow…it was only eleven years ago (almost to the date!) that I was dancing Sevillanas (a form of flamenco) at the feria in Sevilla…only!!  The poor dress was in my closet all covered up in plastic for eleven years!  I thought I would wear it to Halloween or some fun costume party, but alas the moment didn’t arise for such an occasion.  The dress is in fact too big for me now, a good thing.  I really wanted someone to have it who would be able to show it off…I wanted to share its beauty.  As I walked to the car this afternoon, I caressed the fabric one last time, feeling the weight of the layers of material.  I thought about my time in Spain in the spring of 1998, I thought about the generosity of my parents in gifting me such a wonderful, tangible memory of my life there.  Yes, part of me felt quite guilty for giving that gift away to someone else, but I wasn’t satisfied just looking at it in my closet.  I felt sad, like the dress needed a new home so others could appreciate its beauty.  I have my memories and my photos, and the knowledge that someone else will feel the layers swirl around them as they turn.  Someone else will sense the magic that is the fabulous world of flamenco.

Speaking of magic, If you haven’t seen this, you need to watch it: http://www.youtube.com/watch?v=9lp0IWv8QZY …it is absolutely worth the seven minutes!  WOW!  I definitely got teary after hearing that.  I love “Les Miserables”, and “I Dreamed a Dream” is one of my favorite songs.  I felt so proud of her after watching it, and I don’t even know her!  I hope this brings wonderful surprises to her life, and I hope all who doubted her learned a little something from her remarkable performance.

OK, enough of my commentary.  I’m sure you’d love to know all about me and how I am, right?  The answer better be yes, by the way!  :)  We had a wonderful Easter.  Aunt Nancy, Uncle Bill and my mom’s cousin, Larry, all came over on Saturday.  Katie also came up for the weekend.  We ate lots of yummy food, and talked about pretty much everything you can imagine!  I treated myself to a glass of wine because I figured, if I’m allowed to have some sangría at Paloma’s wedding in a couple weeks, then I can have some wine on Easter!  It tasted good, and no, I did not get tipsy off of one glass.  :)  Please…I have Laura’s cells now, remember?!  hahahahahaha  Just kidding Laura…love ya!!  You’re my favorite “gift of life”.  :)

On Easter night, my mom and I went to Laura and Tiso’s place to let Indie out while they were at work.  I took her on a nice little walk, and we saw a bunny twice!!!  I haven’t seen a bunny in forever, so I figured it must be good luck to have one cross your path on Easter (and even better if it appears twice)!!!

I’m feeling well, although I have some marks that look kind of like pimples on my face.  I see new ones every day, and the thing that worries me is that they’re itchy.  It feels much more like a rash than a pimple, so I’m worried it may be GVH of the skin again, which is why I’m calling the doc’s office tomorrow to see if I should come in before next week.  For a little bit, I thought, “oh man…what if it’s chicken pox?!!”, but it’s only on my face.  I never broke out much, so I’m pretty convinced they’re not lots of pimples.  If it’s GVH, I assume I’ll have to go back on Prednisone for a while, which is disappointing, but if it works, then that’s all that matters.  I’ll keep you posted.

Anyway, it’s getting late (1:30 AM!), so I’m off to bed.  But before I go, I just wanted to say HAPPY BIRTHDAY, KATHY!!!!!!!!!!!!  I hope it’s sunny, warm and beautiful!

Lots of love,


Friday, April 10th, 2009

Happy Thursday, everyone!

It was another beautiful day…I rode my bike, painted with Dorothy, played with lots of dogs, and made a delicious dinner (if I do say so myself)!.  Now I’m typing in the blog (obviously) and savoring a very yummy orange.  When I studied in Spain (eleven year ago…can you believe it?!!), they would often have oranges for dessert, so when I saw the huge, beautiful Navel oranges in the store tonight, I just couldn’t pass them by.  I’m ready for seconds!!

As you know from my previous post, I remain leukemia-free!!!!  Talk about peace of mind.  The message is still saved on the phone, so I can listen over and over again about how healthy I am.  Nah, I won’t save it that long, but I have listened to it twice, and I can’t help but smile each time.  Thank you all for your well wishes on my blog and facebook.

Wow, I can’t stop yawning!  Once again, it’s a short post (lucky you!).  I’m looking forward to a warm, rainy day tomorrow and a great weekend.  Katie is coming home to spend Easter here…no more searching for  baskets filled with candy like when we were little, but it’s still fun.  :)

Before I sign off, I want to send some love out to my cousin, Ethan, who was bitten by a snake yesterday!  I’m glad you’re ok buddy…that will be a cool story to share…don’t forget to exaggerate the size of the snake!  :)  I can’t wait until I’m allowed to come up and visit you, Noah and little Addie.  Give everyone a kiss for me (even the dogs!!).  Also, I want to hear more about your science project!

OK, I hope all of you enjoy your Friday (hopefully you have the day off!).  Oh, one last thing.  I watched some of the coverage of the funeral procession for the three police officers killed in Pittsburgh, and it was very touching.  It was such a horrible story, but the outpouring of support from all over the country and Canada was incredible.  I hope the families found some comfort in that.  I also want to thank all police officers for what they do every day to protect us.   Though this quote may apply to many different public servants, I thought it seemed to express the perfect sentiment to honor those officers:  “Men do not really live for honors or for pay; their happiness is not in the taking or holding, but in the doing, the striving, the building, the serving.” -Harry Marsh

Sending lots of love out to all of you in the Pittsburgh area (oh, and the rest of you too!),


April 7th, 2009…a day to remember!!

Wednesday, April 8th, 2009

Well, that kind of makes it sound like I had some sort of adventure today, but I didn’t.  I did, however, have my 18th bone marrow aspirate which came up clean!!  Laura’s cells are doing their job, and I can go to bed and have sweet, sweet dreams.

Actually, these last two days are days to remember.  No more cyclo, I’m 6 months out from the transplant, and things are lookin’ good!  I am extremely grateful, I’m relieved, and I’m tired.  :)  So that’s all you get from me tonight!  I’m off to bed.  I think this must be the shortest post ever.  Night!



Sayonara, Cyclo!! May We Never Meet Again.

Tuesday, April 7th, 2009

That’s right!  I took my last cyclosporin (or “cyclo” to those who know it well) this morning, and I just realized now that I didn’t properly celebrate.  I guess I forgot it was my last one!  I’ll celebrate by having some hot cocoa with Reddi Whip for my dessert!  :)  OK, that’s not really a celebration ’cause I have it almost every night, but it’s still something to look forward to!  I will also take my last Dapsone tonight (an antibiotic).  The only Rx’s I will continue are the Acyclovir, Fosamax, Xyzal, Nasonex and Yaz…hmmm, actually, that’s a lot, and I think I’m even forgetting one!…plus several supplements.  It feels like less because the Cyclo is such a big deal; no more big fat grey, skunky smelling “tick” pills for me!

Tomorrow’s a big day!  I go in and have the first bone marrow aspirate/biopsy since before I left Seattle.  I’m looking forward to good results, so I can attribute these aches and tiredness to transplant effects.  I should have some idea of the results tomorrow night when Dr. Kales calls me after looking at the cells, and I will certainly let you know ASAP!

I have a couple mouth sores right now, so I started doing salt rinses to prevent GVHD of the mouth.  They’re not painful, but they sure are ugly–just reddish-purple marks on the inside of my cheek.  I’ll mention those tomorrow.  I’m also taking along my handy little notebook so I can ask all my questions.  I don’t think there have been many visits when I didn’t go in with comments and/or questions.  They loved it in Seattle, and I’m pretty sure Dr. Kales does too.  :)

OK, enough medical stuff…on to my exciting weekend.  My dad’s friend, Charlie, came out Saturday to do some metal detecting.  I guess I should explain a little more so you know why he would want to come out to our house to do it!  We have a mill site on our property down near the creek, somewhere I would go when I was little to eat lunch and explore the woods with friends.  It’s from the 1800’s, and if you didn’t know what it was, you might just pass by, thinking it was an interesting pile of circular rocks.  :)  I just tried looking up specific info about it through google, but I couldn’t find anything.  I’m not sure if it’s because it’s privately owned or what, but I do know that many years ago, a museum wanted to take the stones to display them, but my mom said “no!” because she figured they are more appreciated in their natural setting, which is definitely the truth!  If I walked by some mill stones in a museum, I’d probably say “Oh look, mill stones” and move right along.  If I’m walking in the woods behind my house and come upon them, well, then it’s part of history!  Anyhoo, this is a long story, isn’t it?  I just wanted to give you some background on the site and our neighborhood so you could understand why metal detecting could yield such wonderful results!  And just to add to your knowledge just a bit more, the neighborhood was once owned by the Simpson family.  There is an original house (the farmhouse), a barn (which was turned into a very cool house many, many years ago), and a cemetery.  I always thought the cemetery only had graves for three or four people because there are not many headstones, but I discovered this tidbit of information: http://www.fairfaxcounty.gov/library/branches/vr/cem/cem273.htm which taught me otherwise.  In my younger days, we would walk up to the cemetery at night with a baseball bat, Agatha and Sherlock (our Border Collies), a patrol belt (OK, I only wore that once, just so people would know I was in charge!), and try and scare ourselves.  The bat and the dogs were for protection, in case we came upon any crazies while out walking.

Moving ahead with my story though, our adventures in metal detecting taught me a new appreciation for history and our own property.  It’s pretty cool to think of soldiers camping in our woods during the Civil War.  The mill site and and the creek would have been very important to them when picking a place to camp or rest.  Luckily, it’s not a well-traveled woods, so running into a lot of modern-day trash like bottle caps and today’s modern bullets would not pose much of a problem.  I included pictures below of what we (well, technically, they, ’cause I’m not allowed to go digging around in the dirt–I was just there to photograph the events) found. :)  We only worked on a small section of the woods for a couple hours, and they found all those relics.  I was (and still am) quite excited about it, and I’m looking forward to having Charlie come out and do it again someday.  Something he mentioned that I found quite interesting:  I asked him if he was allowed to hunt at battlefields, and he said no, and that actually some battlefields have had planes fly over to drop lots of nuts and bolts and metal that’s worth nothing.  This way, a relic hunter would be discouraged early on, and wouldn’t disturb the battlefield.

When we came back home, we were all hot, hungry and tired (even though I didn’t do the physical labor involved…digging, filling dirt back up, holding the metal detector for extended periods of time).  I also came back with ticks…three of them!!!  Now why hasn’t anyone invented the “tick detector”, a device that acts as a scanner and you aim it from your head down to your toes so you know whether there’s a tick on you!  They’re so gross!  I had two on my left leg and one on my left shoulder.  Needless to say, I treated myself to a nice, long shower.

Saturday night, I made a picadillo (see http://en.wikipedia.org/wiki/Picadillo) and we stuffed it into tortillas…it was delicious, if I do say so myself!!  It had ground beef, raisins, olives, black beans, red peppers, onions and lots of delicious spices.  My dad already requested that I make it again this week.  I think it would taste great in an empanada, so I’ll have to try that someday.

Sunday, my mom and I ran some errands and enjoyed the beautiful day.  In the evening I drove downtown and ate a superyummy Italian dinner with Kristi and Dave.  Thank you again for having me—it was a wonderful meal, and I enjoyed the company too, of course.  :)  I forgot to take a picture of you two for the blog though!!  Next time.  It was a beautiful drive down and back, and it was wonderful to spend time with them and catch up.

Well, it’s gettin’ late…it’s 12:48 AM, so I officially wish myself a Happy Six-Month Julaura birthday!!  I have a big day tomorrow, so I better hit the hay.  Oh, and more importantly, I’d like to wish Tiso a HAAAAAAPPY BIRTHDAY!!!!!!!!!!  I hope you have a great day, Tiso.  I know I will!  No cyclo, no dapsone, 6 months out from the transplant, and getting ready for my 18th bone marrow.  Yes, I’m even excited about that last part because it will give me peace of mind.  In six more months, I’ll be back in Seattle for my check-up, and I’ll be ready to paint the town!!

Lots of love to everyone, and remember:  “Never look down to test the ground before taking your next step; only he who keeps his eye fixed on the far horizon will find the right road.” - Dag Hammarskjöld …..Deep thoughts by Dag…I’m lookin’ at the horizon!  I’ll be really pissed if I trip on something while I’m trying to find the right road…I’ve had enough hiccups in life, and it’s time to plow ahead.  :) —-I mixed so many metaphors there, and it was great fun, but I hope it makes sense.


Spring Photo Shoot

Friday, April 3rd, 2009

I hope you enjoy the photos from today!  I decided to roam the yard in search of beautiful flowers, and as you can see, I found many!  Guinny was not in a photo shoot mood today, so that’s why he’s not featured.  ;)  I painted some more today with Dorothy (I’m trying to transition from saying “Mrs. Dowdy”).   :) It was quite relaxing, and I’m pleased with how my flower is coming along.  It’s just so peaceful sitting there chatting, painting and listening to beautiful music.

Since our last painting session, I realized that I notice more color in everything I look at.  Guinness is just full of all different mixes of browns, greys and whites.  In the evening when the sun is setting, it doesn’t simply paint the trees in yellow; I see greys, blues, greens, whites…learning new ways to experience my surroundings makes me appreciate nature all the more.  It also gives me a newfound respect for artists who can capture each detail of the various colors.

I hope you enjoy the pics!  I’m pretty happy with how my flower-picture-taking skills are developing.  :)

Have a wonnnnnderful weekend!

Lots of love,


PS My friend Elvira just sent me this link and I knew I had to share it with you…can you believe it?!!  Creeeeeeepy!!!!!!!!!  http://www.momlogic.com/2009/03/the_baby_snuggie.php

Thursday, April 2nd, 2009

Well, hullo there!  How are ya?

Not too much has changed since I last wrote, although I did rescue another mouse.  I had another talking-to with Bella, but she just turns around so her butt is facing me.  Cats…they just don’t have the same respect for humans that dogs do!  I still love ‘em though.

Instead of writing another of my amazing, one-of-a-kind posts tonight, I’m just going to copy what I wrote on the questionnaire I received from Seattle today.  Every year, Long-Term Follow-Up sends out questionnaires to find out how patients are feeling physically and emotionally.  There are lots of “yes or no” questions regarding physical/emotional symptoms, requests for prescription updates and consulting doctors’ information, as well as a place for comments.  The “comments” section is what I’m copying and pasting for you tonight:

“Although I feel any worries I had before doing the questionnaire are diminished a bit (considering the types of question asked and the other possible problems I could have), I still feel anxious.  I am having a bone marrow biopsy next week at my request.  I don’t necessarily feel my leukemia’s back, but I worry when I feel more tired, and when I can sense a pulse in my head.  I have uncomfortable head/neck aches (for the last 2or 3 weeks), and being relatively isolated leaves me feeling antsy.  Because I’m not working, I have a lot of time to think and worry.  I’m able to distract myself, but to be honest, I feel fairly discouraged right now.

After re-reading what I wrote above, I realized it made me sound as if I were sitting in a chair, doing nothing and feeling sad.  That is far from the truth.  I spend a lot of time outside, playing with my dogs and helping my neighbors with theirs.  I walk, I recently started cycling, I work on projects around the house.  I read, spend time with friends and family, and I dance (not formally, just around the house! :) ).  I keep a blog about my cancer experience, and I’m working on an article to submit to a local magazine.

I try and push through pain from the head/neck aches, and I’m always thinking of ways to keep up a positive attitude.  All in all, I’m doing very well, but I also wanted to express my worries.  They come and go, and I guess lately they seem more nagging, which is why I wrote about feeling discouraged.  I keep repeating this affirmation:  ‘I will recover fully, I will stay in remission, and I will live a normal life.’  With the help of the SCCA, my local MD team, friends and family, I do believe that is true.”

Included with the questionnaire was a collection of comments from patients last year.  Some were positive, some quite negative.  I read a lot of them (but not all–there were a lot!!!).  Several comments centered around feeling tired and achey, apparently a common bond between both new transplant patients and those many years out.  That made me feel more normal, but I don’t want to feel this way years from now!  Still, I felt relieved to read this comment:  “It takes time, a lot of time, before you get past the fatigue and other symptoms and feel somewhat normal.”

Not surprisingly, I concentrated on the positive remarks.  There were many notes from patients 20+ years out!  That in and of itself is encouraging!  There was someone who’s run six marathons since the transplant, someone else who cycles 110 miles, runs 8 miles, rows 18 kilometers, and does yoga 2-3 hours A WEEK!!!  There were funny comments, like the patient who tells friends it’s good he/she was “highly intelligent before all that chemo, because now [he/she] is just a little below average”.

The negative ones seemed to focus on the quality of life post-transplant.  One person termed it being an “existor” rather than a “survivor”.  Another patient wrote that “the cure is worse than the disease…if [his/her] AML were to return, [he/she] would be at peace with death and a quick one at that.”  This was written five years after his/her transplant.

Many patients struggled with the question of whether any aches/pains were caused by aging or residual effects of the transplant.  That makes sense…I guess from now on, I’ll always wonder what causes changes in my body.  There were eleven pages of comments, and I plan on saving them for when I need a pick-me-up (you can bet I’ll be staying away from “The Worst of Times…” section)!!  :)

Filling out the questionnaire made it clear to me that I’m doing spectacularly well because I could answer “no” to questions like, “Have you had a lung biopsy?”, “Have you been diagnosed with a skin cancer or any other type of malignancy?”, “Have you had an organ transplant (kidney, lung, liver, heart, others)?”, “Have you had surgery to replace a joint?”, “Have you been diagnosed with a cataract?”, “Have you had any seizures, fits or convulsions?”.  Do I feel like myself?  No.  But judging by the questions in the form, I think I’m doing quite well considering.

Also, they sent some long-term follow-up recommendations, and the first one talks about how transplant patients are at an increased risk of cancer, specifically cancer of the skin, mouth, breast, thyroid gland and brain.  My nurse practitioner didn’t mention those when I asked her the other week…I knew there were other specific cancers I would be at risk for other than blood cancers.  Not that I’m happy about that, but I am happy that I was right!

Even though I probably shouldn’t be copying all these quotes into my blog, I found them helpful so I wanted to share them with you…don’t tell the SCCA I did this!  :)  I’ll end with their “final thought” because it is beautifully written and nineteen and a half years from now, I hope to reflect on my life the way this patient did:

“Twenty years ago I was in my twenties, scared and uncertain about the future, not knowing if I was going to live or die.  The transplant was my last ray of hope and it saved my life…What I would have missed:  finding the love of my life and celebrating our 15th anniversary (he fell in love with me when I was still hairless).  I would have missed hiking in the Sierras and Idaho wilderness, skiing at Squaw, Alta and Alpine, sharing companionship with 3 great canines, canoeing in the Oregon lakes, and a road trip from California to Canada.  I would have missed becoming an Aunt, now a great Aunt.  I would have missed attending nursing school shortly after my transplant, becoming a nurse to work with AIDS patients, cancer patients and the elderly.  I would have missed chocolate, the song of the sparrow in the spring, the rainbow at the end of the rainstorm.  I would have missed my mother and father growing older, the wisdom of great Aunts, and hugs from old friends.  I would have missed my sisters all becoming mothers.  I would have missed the sweetness of my friend’s viola in Mozart.  I would have missed being part of others’ lives, however small.  Thank you for giving me back a wonderful life.  I would not have changed anything.”

When I write mine in nineteen and a half years :), I hope to include how I traveled the globe, fell in love, started a family, participated in multiple Team in Training events, learned another language and some new songs for the piano, filled up my recipe box, and contributed to society with a wonderful career (hmmm…I wonder what that will be?!!!).  I would like to write about how I planted a garden, landscaped my home, cooked like a pro, and went to at least one Yankees game a year (in New York, that is).  I will write about all the celebrations I enjoyed with family and friends, and all the hours I spent playing with my dogs.  Finally, I will write about how I thank Laura every day (mentally, that is…you don’t need me to call you and say “thank you” every single day!).  :)

Oh, and one more thing!  Now that I’ve tried those delicious cupcakes the cupcakeries (is that a word?) sell for $2.75 each, I would like to write about how I savored at least two of them a year.  And rhubarb pie!  And spinach and artichoke dip!  And the occasional blizzard from Dairy Queen!  OK, I better stop…I could go on and on.  ;)  You get the idea.

I hope you’re all doing well…just a couple photos for you tonight.

Love ya,

Miscellaneous Thoughts

Wednesday, April 1st, 2009

Hi there!!  How are ya?  I’m well, except for a head/neck ache and a bit of a sensitive tummy.  I will mention these to the doc next week, and I’m hoping the tummy issues are not at all related to GVH of the gut.  I’m almost done with the Cyclosporin–down to 25 mg a day, isn’t that amazing?!!  Just think, I started out at over 300 mg (twice a day!) and now it’s 25 once a day.  Very, very exciting, but at the same time, I have to be even more watchful of possible GVH outbreaks.

I’m enjoying all of the beautiful weather, but I haven’t yet established a fixed schedule for riding my bike, walking, doing some of my DVDs.  In fact, I’ve been relatively lazy this last week.  I was able to catch up on some facebook stuff today though, so that made me feel good!  Plus, I finished my project of putting my CDs into those big books with sleeves.  My CD holders were getting rickety and so many of the cases were broken.  I think I’ll listen to a greater variety of CDs now that they’re easier to find.  In fact, I’m listening to one right now that I haven’t heard in years….good stuff!

Going back to enjoying the weather, there’s a little red fox I keep seeing in the neighborhood.  The first time, he was in a big field up near the front entrance, the second time (last night), he was watching me play with the dogs from the safety of my neighbors’ yard (maybe he knows the dogs have an electric fence!)…it kind of seemed like he wanted to play some ball too.  I saw him again this afternoon walking into my neighbors’ yard.  When he was in the front yard, the deer were roaming the backyard.  I find such peace in nature, and I feel very lucky to have so many chances to observe all these beautiful animals.  I found another little animal today in quite different circumstances.  (Aunt Bitsy, you might want to skip this part!!) :)  I went outside this morning to find Bella and Guinness batting around a little baby mouse.  I know catching mice is part of Bella’s natural makeup, but I had no idea that they played so long with their prey!  I couldn’t watch it, so I went inside, put on some latex gloves and grabbed a paper cup.  I went back onto the porch and set the cup on the ground.  The poor mouse climbed right into it.  His heart was beating so fast, I thought it might just pop out of his little chest.  I carried the cup to the backyard and let him loose.  I’m sure Bella was pissed, but I felt better.  :)  Ronnie thinks I disturbed the natural pattern of life, but I bet if he saw what I saw, he would have saved the little guy too!  I mean, if you’ve ever read “Stuart Little” or watched “Cinderella”, how could you let it die?  :)

And adventures with nature continue…Guinness ate a bird egg yesterday.  I’m telling you, it’s pretty exciting out here!  Even if I’m not allowed out and about too much, I feel quite involved with all the creatures in my ‘hood.  That being said, I am still craving a night out at “Murphy’s”.  I am so ready to be part of society again, to hang out with my friends and to meet new people.  Yup, I’m experiencing some cabin fever, even though I go out to the doctor’s office, the Safeway occasionally, Laura and Tiso’s house, Petsmart, and to friends’ homes.  I love hanging out with my family, but I’ve already lost several years of unlimited socializing, and I’m really craving it.  A couple more months, I know, but that might as well be years for as antsy as I feel right now.

I want to meet people, I want to date, and I want to forget about the last guy I hung out with over a year ago.  It’s not easy to forget when I have lots of time to think and there’s no one to take his place right now, even when I know that we weren’t a good match!  It’s just crazy how the mind works, and I keep pleading with it to move on to a healthier place.  I only mention this because I ran across a picture of him today, and it made me feel pretty sorry for myself…”poor me!  I’m single, I’m recovering from cancer for the second time, and I have no prospects at the moment.”  I drove out to pick up some skin care products from Clinique with a gift card Katie gave me last year, and on the way back I cried a little (with a little help from some sad songs by Joshua Radin :) ).  When I was feeling the lowest, my phone rang and I saw it was my cousin!  Perfect timing, I thought…it proves someone’s looking out for me to send me a call right at that very moment (good thing my dad had you call me, Trace!).  :)  I talked with her and listened as my goddaughter babbled and laughed in the background.  My tears dried up, and I smiled.  I drove to “Dairy Queen” to treat myself to a Reese’s Pieces blizzard, content that my evening had turned around.

Jennifer, I keep thinking about the comment you made in group last week, about how you wished you were dating someone when you were sick, but how you realized that as a single woman, you could make all decisions purely for yourself, without worrying about the feelings of another person.  You are quite right about that.  Many times, I wondered if having someone to hold me at night would make the experience easier, but being single allows me to focus completely on myself and my healing.

Driving home from Dairy Queen, I reminded myself that I alone am responsible for choosing things to look forward to.  I am the only one who can reel me back when I go to the darkest places in my mind, and I have to constantly discover different ways to bring back the positive thinking.  As I realized that (for the millionth time since first being diagnosed), I thought of a new goal, something to work toward in the coming months.  Anyone up for a hike up Old Rag in June?  I am the only one in my family who hasn’t been, and I think the time is now (well, actually, June…I need to iron out that workout schedule so I can make it to the top!).  Thank goodness I’m allowed to be outside during all of this!  I may be limited in other ways, but the ability to spend time outside (all covered in sunblock and a hat, of course!) is a blessing.

Some good things about being single for so long:  I can choose what and when I want to do something (eg Old Rag), I am strong enough to go to weddings and parties alone, and I’ve had lots of time to get to know myself and what I want.  Of course, I have to remind myself of those things when all I want is to have someone around to comfort me when I don’t feel so strong.  I hate that cancer is so pervasive that it disturbs dating life, but I still have hope that somehow it will all work out OK in the end.

Wow, I’m getting too serious now!  Time to lighten things up.  I saw this first thing the other morning when I checked my e-mail, and I thought I’d pass it on to you…more hula hoop publicity!  Who knew I was so cool?!  hahahaha Check it out: http://www.dailycandy.com/washington_dc/article/42513/Hoops+That+Girl…pretty neat, huh?  Thanks for sending me the link, Katrina and Paloma!  Dailycandy.com is actually a really cool site that sends you info about whatever city you live in….night life, best restaurants, sales, classes, new bars in town, etc…it’s quite informative!

I hope you like the pictures below!  The ones of Bella and Guinness are probably the best ones I’ve ever gotten.

Lots of love,