Julie’s Blog

I feel like this whole cancer experience is like getting a tune-up….or maybe it’s better described as an “overhaul”.  Anyway, it seems that my bike needs one too.  My dad’s bike was fine, but mine was a little beaten up from previous riding days…poor thing.  I also learned that helmets only last about five years, because the foam on the inside starts breaking down.  So I need a tune-up, new helmet; all-in-all, it’s like a fresh new biking (sorry, cycling) beginning.  Pretty exciting, I think!

I’m sitting here now between my pups, reflecting on my day, and picturing how tomorrow will play out.  I’m happy to report that my doctor will do a bone marrow aspirate/biopsy on April 7th (when I see him next).  I’m going to see the transplant nurse practitioner next week, but when it comes to bone marrows, you stick with who you know!  My doctor does such a wonderful job…he numbs me, waits for it to work, numbs me some more, and then he gets out the big guns (well, technically, it’s a needle).  :)  At that point, it’s just pressure.  What am I saying?  You know all this?  I’ve explained it before, so you’re experts!  You basically saw me get a bone marrow what with the photo shoot we did at SCCA!

I’m getting pretty tired now, and I want to read a little Maeve before bed.  I’m going to do that relaxation CD again too…it knocked me out last night!  Too bad I still had nightmares…slowly but surely, I’ll work on my sleeping issues.

I wish I had something profound to say today–something I learned or something cool I saw.  I just enjoyed playing outside with my neighbors’ dogs and my dogs.  Boy was it gorgeous out there!  I hope you all had the chance to get out and enjoy it (at least, those of you in the VA area–I’m not sure how the weather is in the rest of the country or world)!

I’m off.  Enjoy your Thursday!!

Love,

Julie

Last night, I took the facebook quiz “Where should you live”, and guess what popped up?….Ireland!!!  How perfect is that, considering it’s next on my travel wish list?  Not to mention that it was the night before St. Patty’s Day. 

I hope you all wore your green and enjoyed your day.  I went all out…a green sweater, my very favorite jacket (a bright green with my special orange leukemia awareness pin).  It was a good day.  I woke up at 11 (the latter end of the time period Lori suggested–I figure I’ll work myself up to the earlier hours!), ate breakfast, did some errands around the house, let my friends’ dogs out, met with my social worker, played with the dogs, put air in my bike tires (well, technically, my dad did that!), relaxed, watched some “Law and Order” and here we are–it’s 11:37.

I have to admit to you that I was a little nervous getting on my bike because I haven’t ridden it for, I’d say, at least five years.  Poor bike, stuck in the basement next to the ping pong table.  I plan on getting it some extra loving care though.  Tomorrow I’m taking both my bike and my dad’s to a local store to have them checked out and make sure they’re suitable to ride.  I’m no bike expert, so I want to make sure nothing happened to it while it was sitting there so patiently, waiting for me to come take it out again (and ditto for my dad and his bike).  I very tentatively rode it around my driveway, up the hill, down the hill, checking the brakes.  It’s confirmed.  I’m definitely old now because I am scared to fall off my bike.  I didn’t worry about that when I was younger!!  Fear is good though.  It’s a good motivator because it irks me, so I will push through until I ride over it with my bike.  :)  Plus, it makes me extra careful, and there ain’t nothin’ wrong with that!

My appointment with Shara went really well.  She gave me a daffodil plant (see pictures below)!  That’s not why it went well…because she gave me something…but I told her about how I’m having a difficult time implementing a routine, how I slept ’til 1 PM yesterday, how I had a nightmare about the leukemia coming back last night and how I plan on requesting another bone marrow biopsy/aspirate.  We also talked about living wills because I wasn’t sure if the one I filled out in Washington was applicable here in Virginia.  She told me about a document titled “Five Wishes”.  I need to read more about it, but apparently it’s different from other living wills because it doesn’t only focus on your medical wishes.  It also includes spiritual, emotional and personal needs.

I’m not requesting it because I think I’m going to die soon (but I’m pretty sure it’s unavoidable at some point! ), but rather because it’s so important to have all your wishes planned out.  I’ve talked to my family about some of these wishes, so I’m pretty sure they know what I would want, but putting it in writing on a legal document is my last step.  Then I’ll get all that info out of my head, so I can continue on with my life!

And speaking of continuing on with my life, I told Shara about how I’m looking forward to going to three weddings this year.  Paloma, I mentioned that I was disappointed I wouldn’t be able to drink some sangría at yours, and she advised me to ask my doctor if I can at least have one glass.  :)  I’m wondering if the “no drinking” rule will still be in effect since I’ll be off the Cyclosporin and Dapsone by then?!  I added it to my list of questions for the doctor. 

I also called the office today to ask if he will do another bone marrow aspirate/biopsy on me when I go in.  Last night, I dreamt that I had bumps all over my body, and that it was GVHD.  I also dreamt that my nose would not stop bleeding, indicating a significant drop in platelets and likely leukemia relapse.  It was not a good night for sleeping.  When I woke up, I asked myself, “How can I achieve peace of mind?”, and the only answer was to request another look at my marrow.  I truly believe that it is not back, and that my body is trying to work its way back to normal, but I need to know.

I hate that this will be a worry for years to come, but everyone who is labeled as “cured” has walked where I am now.  Day by day…there’s no other way to face it.  As the saying goes, “it starts with a single step”, right?  There’s no skipping ahead to five years from now.  I wouldn’t want to miss these next five years anyway, because I have a feeling they’ll hold a lot of happiness and excitement for me.

OK, now I’m trying to think of something happy for you to read and me to think about before sleeping…did you see the stars tonight?  Beautiful!  And the spring bugs are out, starting their nighttime serenades.  Hey, what ever happened to the whippoorwill (by the way, I know it’s a bird and not a bug — I was just thinking about it)?  When I was little, they would sing at night, and it scared me.  My mom always told me, “Listen!  They’re saying ‘go to sleep…you are sweet!’ “.  Apparently, I’d reply, “They are!!!!” and fall asleep.  I think I’ll imagine my mom’s saying as I drift off tonight so it can bring me sweet dreams.  :)  Check out this site to hear the whippoorwill–it’s not too far down the list:  http://www.mbr-pwrc.usgs.gov/id/songwav.html…hmmm…doesn’t sound like “go to sleep…you are sweet!”  :)  I think I must have been a gullible child. 

OK, I’m off to read a little, and listen to the relaxation track on my ipod.

Even though it’s 18 minutes past St. Patty’s Day, I figured I’d end with an Irish blessing:

“May love and laughter light your days,
and warm your heart and home.
May good and faithful friends be yours,
wherever you may roam.
May peace and plenty bless your world
with joy that long endures.
May all life’s passing seasons
bring the best to you and yours!”

Lots of love,

Julie

I did a bad, bad thing today.  I woke up around 10:30 or so (after snoozing several times), threw some laundry in the washer, let the dogs out, took my pills and gave Jameson his antibiotic, and then I decided to lay down for 20 more minutes.  I woke up at 1.  Now, here’s the thing:  I could have easily stayed awake at 10:30, but because I knew that any activity I chose to do around the house, I would be doing solo (starting a project, emptying the boxes in the room), I was unmotivated.  Of course, when I woke up, I felt guilty, especially after reading what Judy (our awesome dog walker) wrote: Jameson played a lot (as usual ), but Guinness seemed sad and just laid on the steps.

Perhaps I’m giving myself too much credit (this is what my mom thinks!), but I truly believe that Guinness feeds off of my energy.  Although he may seem like a very independent dog, he gets his security from the family.  He acts like a cat, sitting in his own chair and not asking for much attention, but he’s happiest doing it when we’re all with him.  Does that make any sense?  He picks up quickly on change, and this morning’s routine was anything but typical!  He played a lot with me in the afternoon, so that made me feel better.

Regarding tricks for waking up earlier, Lori suggested setting a window of time for my alarm in the morning, say between 9 and 11.  This sounds quite reasonable.  Hopefully I can start with the later time, and gradually set it earlier and earlier.  Hmmm…this is such a boring blog tonight!!!!  But this is my life, so I will share it! 

Of course when I sleep late like today, I worry about leukemia again.  Is it back and making me more sleepy?  What were those minor aches in my back last night?  When I force myself to think about it, I believe I’m being too hard on my body.  It’s still recovering from the transplant, and I’ve been trying to push it a little more lately with more walking, dancing, lots of laundry.  I visualize the minor aches as more white cells growing in the marrow.  But I still worry.  I watch tv and distract myself, but when a commercial comes on, I wonder, “what was it that was irking me just a little while ago?—oh yah, worrying about the leukemia”, and an uneasy feeling fills my stomach and my mind. If I can’t erase “worry” from the dictionary, I would love to just shake it off and put it in a box high up on a bookshelf, so I can forget about it…or better yet, I’ll put it through the shredder…yah, that would be perfect!

So here I go again, passing the worries off to you!  Also, simply putting pen to paper and writing “request another bone marrow biopsy/aspirate” frees me of worry.  Now I’m off to read some Maeve Binchy.  I find that filling my mind with fictional stories is quite helpful also.

I hope you all had a wonderful Monday!  Happy almost St. Paddy’s Day!  Don’t forget your green! 

Love,

Julie

Well, thanks a lot, Laura!!!!  Guess what I dreamt about last night?  That’s right…people smelling poop to get high.  Needless to say, it was pretty disturbing!!  Tonight, I’m definitely going to either watch or read something funny and happy before hitting the hay.  It’s 5:49, and I’ve been sitting in the same chair all day, writing e-mails, doing some internet research, reading the “Washington Post Magazine” (Kristin, you got me hooked!), taking breaks only to dance around and play with the dogs.  I think I need to go play with them outside before we lose daylight, so I’ll be back.  No day is ever complete without playing outside with Jamie and Guinness.

OK, I’m back!  It’s now 10:26 PM (don’t you love how I give you the exact time?–not 10:25 or 10:30, but 10:26).  It was a relaxing, lazy Sunday…oh, by the way, I haven’t been playing with the dogs the past five hours, just in case you’re wondering.  You know, they actually didn’t seem like they wanted to play today–I think maybe they enjoyed their lazy Sunday as well.  I guess I can be lazy any day of the week right now, but there’s just something special about Sundays.  It’s nice that my parents are home, and we can all relax together. 

I’m looking forward to meeting with my social worker again this week, and I will be sure to let you know how that goes.  I actually don’t have any medical appointments this week!  Pretty exciting, don’t you think?  I should get started on one of my many projects…do any of you have any motivational words to help me get up earlier in the morning so I can make my day useful?  I wake up around 11 or so every day now, and I stay up ’til about 11:30 or midnight…it’s not as bad as when I first got back from Seattle, but I’m still not happy with my sleeping schedule.  I know I don’t physically need that much sleep, but it’s way too easy to snooze my alarm and roll back over, considering I don’t have many things that I actually need to be doing.  Also, do you have any advice about how to tackle a big project?  Mentally, I know I just have to get started, but I’m constantly finding other things to do.  Have I told you I still have boxes in my room from when I got home from Seattle?  Well, I do!  I mean, I don’t have many, but I do have a couple, which seems quite silly after being home for two months.

I still think about Seattle every day.  I picture myself walking along its streets, sitting by the fireplace at REI, enjoying the various restaurants, walking along “Julie and Carol’s Way”, looking out at the water.  I so wish it were closer to Virginia!!

Well, I’m getting pretty tired.  I hope you all enjoyed your weekend.  It was a good one for me!

Lots of love,

Julie

Happy Saturday, everyone (well, technically, it’s almost Sunday)!

What a wonderful day it was.  I went to my friend, Paloma’s, bridal shower today, and I haven’t seen her since before I left for Seattle.  I felt like my normal self almost, meeting new people and catching up with some whom I haven’t seen for a long time.  It’s interesting to be among a mixed crowd, where some knew of my illness and others didn’t (the latter were probably wondering, “What’s with the girl who doesn’t wax her eyebrows?  Someone needs to tell her that’s not the style these days!” ). hahahaha  Seriously though, although I enjoy talking about my experience, it’s also fun to be anonymous, and just be the hairy girl at the party.  :)  By the way, that should end relatively soon, I hope!!  My Cyclosporin taper ends April 6th, and I’m looking forward to that day!

Oh, and before I forget, Katie informed me that I spelled “tattoo” wrong about a hundred times in my last post, so I wanted to correct that!  Now I know–two “t’s”, two “o’s”…thanks for the info, Katie.  :)  OK, now back to Cyclosporin and hair.  So, yes, I’m looking forward to going off of it very soon!!!!  I actually plucked a few eyebrow hairs today–they were right in the middle–the connecting part of my unibrow.  :)  I didn’t do anything crazy, I just wanted to test it.  I did OK, but then bled a tiny bit, so I stopped.  My platelets are just so good right now that I thought it would be OK, but I won’t try again.  I was actually thinking of wearing makeup today.  Today was special not only because it was an important day for Paloma, but also because I actually dressed up a bit (OK, I wore a nice top…I admit I still wore jeans)!  Wearing that top made me feel pretty and proud all at the same time, pretty because it’s nicer than t-shirts and sweaters, and proud because it seems like a step closer to recapturing my identity.  I mean, dressing up means I’m A-OK, right?  I didn’t end up wearing any makeup because my eyebrows are so ridiculous, it just seemed silly to try and cover them up at all–no need to highlight the extra hairs, right?!!!  I got excited just thinking about wearing it though.  I know I’m a lot closer to being me again…my cheeks aren’t nearly as swollen, hopefully the hairs will disappear in April/May, and then I can use makeup again!  I’m working on fitting into my “skinny jeans”, and I hope to go back to Seattle in October wowing them with my appearance.  I’ll do a little visualization just for that special occasion.

You know what was funny?  On my way to the shower, I was driving down Braddock Road and I noticed a bus next to me.  The side of it read “US Army Band, ‘Pershing’s Own’”—that’s the band that includes SFC Colin Eaton who sings the version of “Precious Lord” that I love so much…I thought to myself, what are the chances of ever seeing that bus?  I think it was a sign to remind me that everything was all right, that someone’s lookin’ out for me.  I pray a lot to relatives who have already died, because it makes me feel secure to think about them looking out for me…I picture their faces, and imagine how they would reassure and encourage me.  I firmly believe one of them put this bus in my path today to remind me they’re listening and they’re still with me (maybe Mary Ann or Uncle Pete?…what do you think?).  Either way, it made me smile.  Don’t worry though…I don’t see dead people for real or anything…and speaking of, is there anyone else out there who thinks the “Sixth Sense” is one of the creepiest (yet best) movies ever?!!  Whenever I see a bike helmet, the first thing I picture is that lady beside the car door….oooooohhh..creepyyyyy!!

If my relatives are watching out for me, they’re probably having a good old laugh too, because I’ve really gotten into dancing around the house when no one else is home.  :)  I keep adding songs to my ipod, and I just can’t help myself when I turn it on!  It drives Jameson crazy…he runs to get a toy to keep himself from barking at me.  Guinness, however, gets super-excited and jumps on me (and if you know Guinness, you know how laid-back he is—this is not his typical behavior!!).  He loves music in general.  You should see him when I play the piano.  He comes and lies on top of my feet.  Jameson, however, runs to find  a toy again.

I was so in to the music today that I made a new CD called “Julie’s Most Random Mix Ever”, sharing copies with Katie and Laura as well (Katie, you inspired me to make it because of the country song we heard this morning).  I can never say enough about the power of music.  Suffice it to say that I sang and car-danced all the way to Falls Church for the shower, and from there to Haymarket to visit Laura, Tiso and Indie.  Haven’t you ever just loved a song so much that you can’t wait to get back in your car and listen to it again?  I love that feeling.  Part of the reason I love driving so much is because of the music…I obviously can’t be doing anything except for driving, so it represents one of the few times I actually sit and listen to the music just for music’s sake.  It makes traffic bearable.

So just a few comments about Paloma’s shower…as you can see from the photos I’ve included, it was a wonderful celebration.  Paloma, your friends and family are so easy to talk to, and today made me superexcited for your wedding.  Not that I wasn’t excited before, of course, but today was a little preview of what’s to come in April, and I can tell it will be a lot of fun!!  I’m looking forward to some salsa dancin’…I bet it will feel just like Spain has come to Virginia.  The hispana wannabe that I am, I know it will be a blast…I’ll have to see if I’m allowed to have sangría by then!  I hope no one tries to talk to me in Spanish though because you know, I only speak a poquito (pronounced poooh-keeee-toe with a country accent).  hahahaha  (sorry, it’s a special inside joke only Paloma and I share)  :)  It’s nothing crazy….one time she introduced me to a relative and told them I spoke a little bit of Spanish.  Well, of course I exclaimed “a little?!” and acted very sensitive about it, and I’ve never let Paloma live it down.  Not as funny without the full context, huh?  Oh well.  Anyway, Paloma, I am so excited for you and Tony!!  You two are good role models for how a relationship should be–you’re both very caring, respectful, and you can find humor in anything….I know you have many, many happy years ahead of you (and lots more trips to Spain too!).  Can’t wait ’til you have a party to try out all the new gifts you got today (except for you don’t have to wear the neglige…actually, I mean, please don’t wear the neglige.  :)  We just want food and alcohol).

As I wrote above, following the shower, I drove (and sang) all the way to Haymarket.  Dinner was yuuuummy (and I loved the jalapeno poppers or whatever they were called–would love to have the recipe, por favor), Indie was adorable, as always, and the conversation was scintillating, especially when Laura told us about the new way people are getting high…by canning their own stool and smelling the gas weeks later.  I think I could have lived without knowing that one!!  You’re all probably wondering why we were talking about getting high in the first place.  Well, Laura made these special brownies…….hahaha just kidding!!!  Katie has a new apartment, and her neighbors told her the former resident sold drugs from the apartment.  Somehow this led to a discussion over the most common ways people get high.  It was pretty disturbing, to say the least!  But that’s the Matthews’/Tiso family!!  There’s no topic we’ll shy away from!!!  But no more poop/gas talk, OK?  That’s just gross, and I’m going to try and forget you ever told me about it.

Well, it’s 1 AM now, Guinness is on his back with his feet up in the air (his late-night sleeping pose), so I’m going to sign off.  I’ll just end with a little shout out to Maria, one of my faithful blog readers.  It was so good to see you today, and if you aren’t able to come to Paloma’s wedding, we’ll have to all arrange another time to meet up.  Congratulations, and I can’t wait to see pictures when you add little Elise (is that how you spell it?) to the family.

Hope everyone is enjoying their weekend!

Love ya lots,

Julie

PS I included some photos of my friends’ dogs I take care of a couple days a week–aren’t they cuties?

Hmmm…good question, right?  Beautiful flowers are starting to come out, yet we might get some snow tonight!!  Interesting weather, we’re having, and I’m loving it!  After my walk today, I played with Jameson and Guinness in the front yard, and I noticed all the blossoms opening up, so I took some pictures to share with you.  The cherry blossoms are only starting to open, and some of the magnolias should be fully open in a couple days.  The daffodils are, of course, the first flower of spring, so they’re already gorgeous!

Have I told you my feelings about daffodils?  I can’t remember.  Following my first treatment for leukemia in 2005, I became addicted to the show “Miami Ink” (about tatoos).  Before this show, I never wanted a tatoo, but after watching it, I realized that many of them aren’t just body art; they also have great meaning to the person wearing them.  I thought, “Well, I would like a tatoo”!  I didn’t want it anywhere conspicuous though.  I watched the show every week, trying to decide what tatoo I would want.  I learned that some people use them to cover up scars, and it came to me!  I should have a tatoo to cover my bone marrow biopsy dots on my back (in the hip area).  Don’t ask me how I learned this, but I discovered that the daffodil is acknowledged as the first flower of spring.  It breaks through the tough, cold soil to show off it’s beautiful yellow bloom.  I thought, “Now THAT would have a lot of meaning for me.  I can cover up my bone marrow dots with an artistic chain of daffodils (in color, of course!), because after all I’ve been through, aren’t I a bit like a daffodil?”  I felt like I had, in a sense, been reborn because I conquered leukemia (and the fact that the daffodils come back every year, despite the environment, seems exactly like a rebirth).  Then, I learned about the American Cancer Society (ACS) and Daffodil Days (where you can donate to  ACS and they will send daffodils to you or a loved one.  You can even make a contribution to have them delivered anonymously to someone in the hospital…I thought that sounded really cool.  Anyway, if you want to learn more, check this out: http://www.cancer.org/docroot/PAR/Content/PAR_4_1_Daffodils_About_Daffodil_Days.asp or get in touch with a local ACS office).  Sooooo, on with my story.  I learned 1)they were the first flower of spring and 2)they were the symbol of hope for the ACS…I figured I made the right choice for my tatoo.  I would wait until my blood counts came way up before getting the tatoo, but I was really excited.  Unfortunately, the leukemia came back before I could have it done, but daffodils symbolize something very special for me now.  I don’t think it’s worth it now to risk any possible problems with a tatoo, so I won’t be getting one.  Seeing them bloom outside is enough to bring a smile to my day…well, that and cutting a few to put in my room…it adds such a warm yellow glow to any space.  :)  That’s a long story about daffodils, don’t you think?  But maybe now when you happen upon some while you’re out driving or walking around, you’ll stop and give them the notice that they deserve.  They’re strong and forgiving of a harsh environment, and their bright yellow color is enough to bring some sunshine to a rainy day.

Moving on from my daffodils monologue, I tried some speed walking today (arms and all!)!  It felt so good.  I love the feeling of twisting my waist while walking because I can almost sense the inches coming off.  Yup, speed walking is perfect for whittling the waist.  Not that I want to lose a lot of weight…I need to lose about 7-10 pounds to be where I was before my transplant.  I need to get rid of my muffin-top (you know, when your belly hangs out over the top of your pants?), and I need to fit into my pants!!  :)  I’m not technically watching what I eat, because I love food.  I rarely drink Coke though, and you know that’s huge for me!  For the most part, when I’m thirsty, I make myself drink water first.  If I’m still thirsty after a bottle of water, I’ll treat myself to a Coke.  I’m picking up some snacking ideas from magazines, and I have a hot chocolate with marshmallows/Reddi Whip for my dessert most nights (after all, I have to eat something chocolatey!!).  We’ll see how long it takes before I can fit into my pants perfectly!

One more comment for today.  So you all know that I watch TV (I’m trying to cut back on that too!), and I’m pretty sure you know how I feel about commercials.  Except for a select few, I mute them.  The most annoying commercials to me?!—eassssssy to answer that one.  The ones with the guy that yells.  I think you know to whom I’m referring.  I googled “yelling commercial guy” and found some more info about him (aren’t you excited?!).  His name is Billy Mays, and apparently he will be in a reality show called “Pitchmen”.  It premieres April 15th on Discovery.  I can’t think of a more relaxing way to finish up tax day, 2009.  Hahahahaha  yeah, right!!!!!  Check it out: http://www.huffingtonpost.com/2008/08/20/billy-mays-commercial-sup_n_120019.html.  From the little bit of research I did, he seems to have lots of fans…how can that be?  Am I missing something?  Sure, sometimes he does make me want to buy the product, but is it really because he TALKS SO LOUD?!  Perhaps the show will tell us more about what makes him so successful.  Don’t forget…April 15th!  I expect reviews of his new show!

Anyhoo, I’m off to watch “Grey’s Anatomy” and “Private Practice” (that whole not-watching-tv-as-much rule doesn’t apply on Thursday nights).

Have a wonderful Friday!

Love,

Julie

Yup!  You read it right!  I went to see an orthopedist today about my knee, and he recommended that I start cycling.  I can still walk for exercise, but he said that biking (or cycling, as he corrected me ) would be good for my knee.  So I’m breaking out my bike!!  I don’t have a stationary one, and I’d rather be outside given the choice, so soon I’ll be out and about, helmet and all.  But I definitely plan on keeping up with the walking!!  He also recommended doing some exercises that strengthen my quads, so I will be concentrating on that too.

He didn’t see any problems on the various X-rays, but if I continue to have pain, I will have an MRI.  By the way, the X-ray technician was this really cute guy.  I had to put one of those gowns on, and when he came back to get me, I had to tell him I was having a little difficulty tying up the gown –and nooooo–it wasn’t my way of hitting on him (I mean, seriously, is there anyone out there who can tie one of those?  It’s like some sort of puzzle)!  Anyway, I failed, and I told him of my troubles and asked if I was the only patient who struggled with it.  He replied that the gowns themselves were simply defective, so I felt much better.  He was kind enough to get me another gown that I put on in the other direction, so nothing was hanging out!  He was probably thinking “This girl has more problems than just a sore knee!!”.  :)  hahahaha  No, he was really nice.

So I need to work on creating an exercise plan to see whether that is all I need to relieve the knee discomfort.  I go to my orthopedist again in four weeks.  As I wrote above, if I’m still having pain, he’ll order an MRI, and the next step could possibly be a Cortisone injection in the knee (with the approval of my oncologists, of course).  I hope I won’t need it!  MOTION IS LOTION!!  That’s my new chant.  :)  I told him how important it is to get my knee back in good working order so I can continue participating in TNT events! :)  Oh, and some good news he shared with me:  I look young!  That’s right, folks…he said I must get carded all the time, and that I don’t look 31.  It’s good because, of course, I want to look young, but it’s bad in that I’m indeed old if someone comments that I don’t look my age and it’s a compliment.  When you’re younger, you always want to appear older, you know?  When you’re old, you want to appear younger.  I’ve arrived at that point.  Oh well!  At least he didn’t think I appeared older than my age.  …I know, not even related to my knee, but it was good news to hear nonetheless!

So what else has been going on here…Aunt Bitsy left today, but we’re looking forward to another visit in May once her classes are done (in case you didn’t know, Aunt Bitsy is a professor of nursing…and a darn good one, I might add!!).  I let my neighbors’ dogs out and played with them for a while.  It was gorgeous out there today!  On my walk back home, I picked up another neighbor and friend, Mrs. Dowdy, and we walked back to my house.  We’re looking forward to being walking buddies!  We talked about everything, and there was one comment she made that I really wanted to share with you, because I thought it was so beautifully worded.  She said she likes to think of my time and treatment in Seattle as a big wave, one ready to crush anything in its path.  Instead of being trapped by its fury, my mom and I are surfing the top of the wave and riding it into the shore (I hope I did it justice, Mrs. Dowdy…I know I didn’t remember it word-for-word!).  I absolutely love that image, and I think I’ll incorporate it into my visualization.

The ocean in general seems to be a good analogy for a disease…I know, sounds weird, but hear me out.  Its waters (cancer, in my case) are incredibly powerful, and it’s important to acknowledge this before leaving the safety of the beach (the epitome of good health).  You might just get swept right out there without any warning, and you have to submit and go with the flow of the water to keep afloat (acknowledge your disease and seek treatment).  It’s important to keep the shoreline in focus (remission!!).  Respect the power of the water and the creatures that live beneath it’s surface (arm yourself with knowledge about your disease), but don’t forget to smile and delight in dolphins or clownfish (e.g.Nemo) or any positive distraction that comes your way (find something good in each day).  In the meantime, wait patiently for that kayak to bring you back to shore (the doctors, nurses, friends and family who guide your way).

I firmly believe I’m walking along the shoreline now, still wary of any crabs or jellyfish that could lie underfoot, but I’m smiling up at the horizon.  The sun is warming my shoulders (that are covered in sunblock, of course!), and I can just make out the beach house where we used to stay every year in the Outer Banks.  The dunes are damaged a little bit more than before, and the house doesn’t look quite as new as when we first discovered it, but I see my family on the various balconies, sitting in the hammock, playing on the beach, and I sigh with relief and joy to know that my life continues on, and the memories keep piling up.

Wow…I’m being deep tonight, huh?  (oops, anther ocean reference!  hahahahaha)  Seriously though, those are just my thoughts.  I definitely don’t automatically think of the ocean as a disease (or I wouldn’t like to go the beach much, would I?), but I figured it could make for another good analogy.  Maybe I’m just tired and all of this won’t sound as good when I re-read it tomorrow.  hmmm…

Speaking of, I guess it’s time to hit the hay.  As I wrote that, I wondered where the phrase came from, so here’s a link I found….verrry interesting.  “In 1902, mattresses were often sacks stuffed with straw or hay (hence the similar phrase ‘hit the sack’).The phrase ‘hit the hay’ seems to have originated in the US sports scene. The Oakland Tribune, July 1903, reported this: “‘Sam’ Berger, the Olympic heavyweight … was sleepy and he announced that ‘he was going to hit the hay.’”  In 1905, Paxton Sport USA included this:  [the baseball player] “has a language of his own. Going to bed for him is to ‘hit the hay.’” “…fascinating, don’t you think?  Now that I’ve shared that very important tidbit of information, I’m off.  I hope everyone is doing well!

Love,

Julie

Here we are, starting another week, and what a gorgeous day it was!!  And it’s a pretty nice evening too…have you seen the moon?  I shut the windows tonight ’cause it got a little chilly, but it was nice to have a spring weekend.  Now I’m sitting here with my pups, getting ready for bed, and trying to get my mind thinking about something else other than the disturbing “Medium” episode we just watched.  :)  I know, I do it to myself with all these crime shows I watch.  Maybe I need to give myself a little “Golden Girls” therapy, whatdoyathink?

Aunt Bitsy got here Saturday, and we’re all having a wonderful time.  Unfortunately, my mom’s under the weather, so she’s not able to enjoy Aunt Bitsy’s visit as much as she usually does, but I know she loves having her here.  I guess that’s one of the best things about close friendships…it’s like having another family member in the house, so you don’t feel like you have to entertain all the time.  Having Aunt Bitsy is easy and fun for my mom (and for all of us!) because she falls so easily into our family rhythm.  She came down to help out when each of us were born, so she was family from the beginning.  And she was part of my mom’s family many years before my parents even met!  I know I’ve written about it before, but they’ve known each other since they were 18, I believe, when they were in nurse’s training together.  It’s so much fun to watch a friendship that is so effortless and true.  I hope everyone can experience a friendship like they have.

I have a bit of a headache right now, so I’m going to rest and read a little before falling asleep.  I know looking at computers never helps cure headaches!  I attached a few photos from the last several days, so I hope you enjoy them!

Also, before I forget, guess what was on Oprah the day after my last post….the Snuggie!!!!  hahahahaha  What are the chances, huh?  Anyway, apparently the creator of the Snuggie is making lots of money, but more interesting to me, there is a Snuggie pub crawl craze making it’s way around the country!!!  Check this out:  http://www.chicagotribune.com/news/nationworld/chi-talk-snuggiefeb14,0,2462007.story Now that would be hilarious and also fun, I’m sure.  I doubt the docs will OK it though.  :)  Maybe next year!  It’s pretty funny to read that the Snuggie has acquired a “cult-like” status!!

OK, I’m off to bed.  And if any of you have Snuggies, don’t be offended!  I’m sure I would enjoy mine if I had one….especially for that pub crawl. 

Love,

Julie

It’s crazy, isn’t it?  The time is going by pretty quickly, and the seventh will mark five months since my transplant.  In some ways, five months sounds like nothing, but when I look at it from another angle, five months is almost six months, which is only 6 months away from a year (aren’t you impressed with my advanced math skills?!!).  The more time that passes, the more secure I feel.  Duh, I’m just stating the obvious, huh?

So everything is going well here.  Let’s see…I’m down to six tablets of magnesium a day…woohoo!!!  I saw a dermatologist for the first time Tuesday.  She did a full body check-up, and she said I passed with flying colors!!  Following a bone marrow transplant, it’s possible to develop a secondary cancer, and skin cancer is apparently one of the more common kinds that patients may have.  To clarify, secondary cancers can happen at any time, but from what I understand, there’s a slightly increased risk for transplant patients.  I’ll ask my doctor next week, so I can explain it better.  I don’t really worry about the secondary cancers, because I do all I can to prevent them:  checking my body for any changes, doing self-breast exams, wearing sunscreen every day (even in the winter, and even if I don’t plan to be outside a lot!), visiting various doctors.

And speaking of, I have an appointment to see an orthopedist about my knee next week.  As I wrote previously, it’s not horribly painful, but it is consistently achy, and I plan on walking several more events for Team in Training, so I need to get it checked out.  I read online that “motion is lotion”, so I’ve been keeping up several days a week with walking in the neighborhood.  I hope that my doctor will be able to pass on some exercises to me.  I definitely feel like the past months introduced me a bit to what it may feel like to age:  you suddenly find that your joints don’t feel as lubricated as they did when you were younger, you find yourself more out of breath when walking up the stairs, you put a pillow behind you when you sit on the couch because it feels good on your back.  It’s pretty shocking when you start realizing your body has more limitations.  I have a good feeling that these aches and discomforts will go away for me, but it helped to make me more sympathetic to anyone experiencing something similar.

Wow…I guess I had a lot to say about those little aches!  I can deal with the bone marrows, but not the aches?  Weird, huh?  :)  To finish informing you about all my appointments, I’ll move on to my oncologist.  My numbers have gone down a bit in the past few weeks, but they tell me that this is normal following a transplant.  A nurse practitioner also told me that I do still have some of my own blood cells left.  I thought since they said I was 100% Laura that I had 100% her cells and none of my own!  I don’t really understand it, but apparently red blood cells have an average life cycle of 120 days, and I won’t be COMPLETELY Laura for a couple more months.  Hmmmm….very confusing.  I just keep visualizing her cells surrounding mine like some sort of gang or something, then they squash them.  A little violent, I know, but I don’t trust my little guys so it’s time for them to “disappear”.

On a more positive note, remember how I mentioned in the last post that Laura and I discovered a secret to making cooking more entertaining?  OK, here’s the key to it:  pretend like you have your own cooking show, and talk to the audience while you work.  It’s much more fun with more than one person (I haven’t tried it on my own, but I’m sure it could still be entertaining…your family might think you’re crazy, but it would still be fun!).  Laura and I realized our show probably couldn’t go on the air though because there were a couple cuss words that came out while we were baking (it was totally Laura, of course!).  hahahaha  I think we would make good tv personalities though.  Katie, maybe you and Kathy could join us, and it could be a sisters’ cooking show!

Hmmm…what else did I tell you I was going to mention?  Oh, my dad’s coat!  I’ve come to love it because it’s warmer than my coat.  I know I look like a blueberry in it (see picture below), but I love it!  It’s so warm.  Guess how old it is?  It’s from the 80s!!!  Crazy, huh?  I looked up the brand of the jacket, and a notice from e-bay popped up and said something about a “vintage jacket”…hahahaha  I don’t know if my dad found it as funny as I did!  Apparently now the company specializes in ski bindings.  I really look hot when I wear the blue coat with my brown and white snow hat and my bright green mittens.  I swear that one of these years, I’ll have coordinated outerwear, but right now it’s all about feeling cozy.  :)  As far as my day in the snow this week, well, see the photos below.  It was wonderful.  My dad and I took the dogs for a walk in the neighborhood, both on the road and in the woods, I played with them outside, I took care of some to-do items, and I enjoyed some hot cocoa.  I’m looking forward to sledding again someday…I haven’t done it in such a long time!  I figure now is not the time to be practicing. 

Lastly, regarding my post from the other day, I will address the “Snuggie”.  I apologize beforehand if anyone owns one of these.  If you haven’t seen the cheesy commercial, check out the website:  https://www.getsnuggie.com/flare/next?tag=os|sm|go|tm .  In theory, it seems like a good idea, however, it just seems ridiculous to me!  Why can’t you simply put more layers on when you’re sitting around on the couch or heading out to a football game?  You have to listen to what they say on the website…my favorite part is when they talk about your hands being “trapped inside” a blanket, and how challenging this can be when you need to reach for something…”trapped”?  Seriously?!!  I don’t have that many problems with my blankets, do you?  Every time I see the commercial, it cracks me up…they are so goofy looking!

OK, there, I got it out.  I didn’t realize I felt so strongly about it.  Again, if you have one, please don’t take offense!  You’ll probably have the last laugh anyway when I find myself “trapped” under a blanket someday. 

Another long post by Julie Matthews.  What can I say?  I’m feeling well, although I was pretty tired today.  I ran out of Ativan, and I did not have a good night’s sleep.  I was still able to fall asleep, but I woke up all throughout the night, and without the Ativan, I had a very difficult time falling asleep each time.  I also had nightmare after nightmare.  I look forward to when I don’t need any aid to help me sleep, but right now it’s more important that I’m able to sleep so my body can stay strong.  I’ll deal with the sleeping situation when it’s a more appropriate time to do so.

Hope you enjoy the photos below!  Can you tell who I spend most of my time with?  :)  They’re my best buds, and I’m so happy to be home with them.

Enjoy your Friday, and the warmer weather that’s coming with it (if you’re in VA, that is). 

Lots of love,

Julie

Here I am!!  I bet you’ve missed me this past week or however many days it’s been.  :)  All is well here.  In fact, I’m basking in the glow of the freshly fallen snow—ok, that’s a lie.  It sounds a lot better than “basking in the glow of the computer” though, don’t you think?  Seriously though, the snow’s really coming down out there now!!  God must have listened when I requested one good snowfall before spring.

All is good.  I’m feeling well, going for walks (I did 3 miles yesterday with the dogs!!), driving around town, dancin’ around the house and yup, breaking out the hula hoop!  I really have to get some practicing in because a friend of mine is having a hula hooping contest at her wedding later this year!  No, I have no delusions of winning because I just am not that coordinated with it, but I’ll get better than I am now, that’s for sure!  The main part of hula hooping for me is the smiling.  For real, try to do it without cracking a smile, I dare you.  In fact, I triple dog dare you (yes, I learned my bullying skills from “A Christmas Story” )!!  Let me know how it goes.

I had a wonderful night tonight.  Six of us from high school got together for a girls’ night (we try to do this every so often, and it always turns into an evening full of nothing but laughter).  I feel so lucky to have all these wonderful women in my life.  I guess it’s extra special because we’ve known each other so long (some of us since elementary school!).  Even if we lost touch for a while when we were busy or not living in the area, once we’re together, it feels like no time has passed.  There is always a lot of catching up to do on our lives/work/families, but it feels so effortless to get back in the groove.

OK, now it’s Monday night, and I’m trying to finish up the post so you can all know that I’m doing well.  I have lots to say (I know, you’re thinking “Uh-oh!  It’s gonna be a long one!”).  No worries tonight though because I’m too tired to put all the info in considering it’s 11:30 PM, and I have three different appointments tomorrow, the first at 10 AM which is quite early for me, as you all know. 

Here’s a quick preview of what I might talk about more in-depth in the next post:  how I feel about the “Snuggie” (advertised on TV), a tip to make cooking more entertaining, my dad’s winter coat from the 80s and my day in the snow.  You can’t wait, can you?!  Well, you’ll have to just sit there in suspense.  In the meantime, here’s a little something to entertain you.  It’s a video about Koko (the gorilla who does sign language)…it’s amazing.  I’ve had this thing for gorillas since I saw “Gorillas in the Mist”, and one of my psych professors at UVA helped to train Koko.  Her skills truly are amazing.  Check out this video (one of many showcasing her ability to communicate): http://www.youtube.com/watch?v=NdACUfI6nA0&feature=related.  Speaking of gorillas, if you haven’t been to the Bronx Zoo, you need to check it out.  The “Congo Gorilla Forest Exhibit” makes you feel as though they are watching you, rather than the typical zoo set-up where we humans gaze at them.  I could watch them all day long.  I know this seems like a random topic, but Ronnie sent me the video, and I just had to share it with you!

On to another random topic, music.  Maura O’Connell is a folk singer from Ireland, and the Matthews fam has always enjoyed her music.  She has one of the strongest female voices I’ve heard.  I recently discovered this song, and I wanted to share it with you.  It’s called “Trip Around the Sun”, and I find it soothing, not only because of her beautiful voice, but also because of the words she sings.  Let me know if you agree: http://www.mauraoconnell.com/disc_dont_i_know.html (Click on “Trip Around the Sun”, and hopefully it will play it for you–it doesn’t play the whole thing though, so you may just have to get the song on itunes!).

OK, that’s all I have to share tonight!  Stay tuned (hopefully tomorrow), and I’ll catch you up on other important goings-on in my life.  :)  Tomorrow I see a dermatologist (just for a general check-up), my wonderful social worker (whom I haven’t seen since before I left for Seattle!), and my oncologist (one of them…I’m seeing two right now, my original oncologist to whom I’m very attached and the bone marrow transplant specialist who is greatly respected in the transplant field).

I’m fading fast, so it’s off to bed I go.  Hope everyone enjoyed the snow day!  Be careful out there!

Love,

Julie