New blog!!!

Hola!!! To read my latest post, visit http://juliekaymatthews.com/, my very own website!!!
It has a better format, and I think you'll like it more. If you don't, don't bother to tell me 'cause Ronnie and I (well, Ronnie mostly) worked hard on it! :) It's still under construction...I'll be adding some more elements, but it looks pretty darn good, if I do say so myself!! So bookmark the new one!!! See you there.

Today was a good day. I woke up this morning at 6:15 to be at the infusion clinic by 7, and they gave me some platelets. Laura and I had fun talking with a patient who I remember meeting back in '05, and I got to catch up with another wonderful nurse who I haven't seen since 2006, when I had my final infusion of blood following my first diagnosis.
When I got home, I decided to try out the new relaxation CD I downloaded, and it worked! It worked last night too. Laura, Katie and my mom all made fun of me because they said it's weird, but it just reminds me of the relaxation we would do at the end of my yoga class. Go to this website to get a preview, but I highly recommend it (as do Lori and Tim, just ask them!): http://www.heidiminnickphd.com/cds.html
Katie's getting ready to go home, so I'll miss her, but she'll be back next weekend. We took the dogs for walks yesterday and today--it was the most beautiful weekend--it's always amazing when it's not muggy in VA in the summer!
I guess I don't have too much else to say today! I'm getting blood on Tuesday, and I'll probably need more platelets later in the week. Other than that, I go to my doctor's office every day so they can draw my blood and give me my blood counts. They also give me a shot of Neupogen...my arms are pretty bruised up now, but they don't hurt. Laura and I were talking with another patient today, and we all decided I need to make up some cool story as to how I got those bruises....like I fought some crazy person off and although I got a little bruised, I won. :)
Anyway, it's gettin' late so I'm gonna go read before I go to bed. I love ending my day with a book, but only if it won't give me nightmares. I also decided when I first got sick in '05 that I wouldn't make myself finish a book if I wasn't enjoying it...I just figured, life is too short for that! I no longer feel guilty throwing the book aside when I realize it's not something I look forward to picking up and reading at the end of the day.
Hope everyone had a nice weekend!
Love ya.

"Flowers bend as the wind blows, but when the storm is gone, they reach toward the sky once again" (Hallmark :) ). My friend, Veronica, sent me a package with this card inside, and I thought I would share it with you because it's so pretty. In case you're confused, I would be the flower, leukemia and the transplant would be the wind and the storm...just in case you don't pick up on the analogy. hahaha :) Seriously though, I've read and re-read the phrase, and I find it comforting and inspiring. Someday, things will be back to normal, and although it may be a while, my life will be unpaused and I can continue on my way. Thanks, Veronica, for the card and all the goodies! I love them!!
So, yesterday was World Hoop Day! I read about it in that article I told you about a couple weeks ago. Apparently it just started last year, and along with spending the day having hooping workshops around the world, the nonprofit also gives away hoops to underprivileged children, from the US to Africa, Mexico and many other countries around the world. I think that's such a great idea because as their website states, others may provide aid for medical and food purposes, but it's important to remember a child's mental health. As I wrote when I first relapsed, it is impossible to hula hoop without smiling. What started as an obsession to teach myself to hula hoop again (after embarrassing myself at my goddaughter's baptism in May :)) has become a symbol of determination and a reminder of the importance of laughter and fun. I don't think I'll be carrying mine on the plane to Seattle, but I will definitely be purchasing one when I get there. Even if I don't feel like hula hooping, seeing it in my room will keep me smiling.
Yesterday was also Ronnie and Kathy's four year anniversary!!!! Happy Anniversary!! Their wedding was the last time we all went to Corolla, NC (they got married on the beach), but I'm looking forward to another trip there when I'm done with all this crap. Corolla is a special place for our family, and we went there many years in a row until I ruined everything by getting leukemia. Oh well, that will make it all the more special when we go back!
Let's see...what else...I've been spending my days going to the doctor and getting blood and platelets. Yesterday AM when I went to my doctor's office, they were unpleasantly surprised to find that my platelets were only 2,000 (remember, the normal range is 142,000-424,000). It's even more dramatic because on the print-out of numbers, it says I have 2 platelets (it's assumed that you know there are three 0's following the number). Platelets are what help your blood clot, and because mine were so low, I had lots of patechia (little reddish or purplish spots, kind of like freckles, that are caused by broken capillary blood vessels). I have a big one on my chest where I pulled the tape off after taking a shower (I have to wrap my catheter in a plastic bag and tape it securely so my dressing doesn't get wet)...when I saw that the night before last, I knew my platelets must have been really low. I have little patechia on my legs, arms, hands and even a couple on my face! That has never happened much to me, so I was worried, but my doctor said that sometimes platelets take a steep nosedive like that, and he didn't seem concerned. If he's not worried, I'm not! Patechia don't hurt or anything, they just look strange. It was critical that I get platelets though, and the infusion clinic was able to fit me in yesterday afternoon so I wouldn't have to go to short stay.
In other blood number news, my neutrophils are now .012!! Not bad since just the other day they were .003...I have a ways to go before I'm not neutropenic, but it's a good sign that they're going up. Also, nothing has grown in the new cultures they did the other day...woohooo!! This means it must have been a skin contaminant, so there is no gross bacteria growing in me...thank goodness!
I have to admit that I'm already sick of traveling back and forth to doctor's appointments in the hospital, but once I get there, I always enjoy talking to the nurses and the other patients. It sucks that I have to be doing all this, but I love the social aspect of it. I've met and reconnected with a lot of wonderful people, and I will miss them when I go to Seattle, but I look forward to meeting lots of people out there too.
Yesterday I was a little down because it was a gorgeous day here in Virginia--not muggy at all---it felt more like early fall. Unfortunately, I spent a good part of it in the car and in the infusion chairs. I was supposed to go see the Gipsy Kings concert at Wolf Trap last night with Laura, Katie and some friends (something we do every year), but the leukemia spoiled that! It would have been an amazing night for Wolf Trap, a beautiful venue here in Northern Virginia. Everyone said that if I couldn't go, they weren't going to go either, and at first I was upset because I didn't want to ruin things for them, but then I was just touched. It was a very kind and selfless gesture ('cause it's sooooo much fun!!!). We'll do it next year guys! I may have missed the concert, but I can have just as much fun (OK, not quite, but still...) dancing around to their music at home. Here's a link to a video of my favorite song by them. Usually they don't have the cheesy 80s music in the background, but it's still cool:
http://www.youtube.com/watch?v=06v2sSqazPo
Enjoy!!
I still had a wonderful time last night though. Some friends came over and we ate some pizza, laughed a lot and hung out on the back porch....sorry about the owls, guys! Next time they'll definitely come. :) Thanks, Pete, Rich and Abe! We all really enjoyed your company, and you gave me something to look forward to all day.
This is another long one...sorry, I know I can be quite verbose, but this is very therapeutic for me so too bad about you! :) Anyway, tomorrow I go in for platelets again (at 7 AM!), and I'm scheduled for blood on Tuesday, but they might have to switch it to Monday depending on my numbers tomorrow. Think good thoughts for my blood numbers!!
I hope everyone is enjoying their weekend...it is absolutely beautiful here! We ate dinner on the porch again tonight...no owls. :) I'm trying to take in all the summer sounds (the bugs, especially the katydids), lawn mowers, the screen door creaking shut (I know the screen door is always there, but for some reason I associate it with summer), the owls (when they come out!)... these sounds remind me of home and summertime, and I have so many happy memories. I know I will need to be able to access these when I'm homesick out in Seattle, so I'm trying to burn them into my mind.
Even though that probably sounds kind of depressing, I really am doing well. I am and will be anxious for a long time, but I think I'm handling things well. I'm terrified to start packing so I recruited Lori to help make it fun. She has helped me clean my room, do Internet searches for housing and donated flights, and I feel so lucky to have her as my friend...well, really, she's like a third sister. Thank you, Lori, for everything!! I hope you had a relaxing day at the beach!
OK, I guess that's all for now. I know I haven't kept up with my blog that well lately, but I think it's probably a good thing because I'm making sure to enjoy each moment with friends and family...I've never been one to sit in front of the computer because I feel like I'm always missing something by being away from everyone else.
I'll try to be a better blogger so you won't have to read one superlong one every few days! :)
Take care, and I'll write again soon!

Hi there! Don't worry...this won't be a long one 'cause I'm a little sleepy now. :) Let's see, what do I have to share with you...they did more cultures yesterday to make sure the organism, which was a type of staph, was a skin contaminant, in which case (the way I understand it) the culture bottles shouldn't grow any organisms. I should find out more when I go to the doctor tomorrow. I got blood today, and I went to the clinic at 6:30 with the intention of getting lots done, however I ended up sleeping about 4 hours or so (those infusion chairs are so comfy, plus I take my travel pillow and a warm fleece blanket).
Well, I must have gotten blood from a very organized person because when I got home, I was so efficient! I got lots of stuff (paperwork stuff) done for Seattle, so I felt pretty happy with myself. Lori, Tim and Laura came over for burgers, and we enjoyed a wonderful evening, so I felt like that was my reward for working hard all afternoon. :) We called the owls out on the porch, and they came! You probably wonder what this means. Well, there are several bard owls in our neighborhood, and we discovered that when we play a recording of an owl that Ronnie got off the Internet, the owls answer! It's really cool to hear, and it's even more fascinating when they perch on trees near the porch where we can see them. No, we're not crazy...ask anyone who's experienced it!! Click on this link and listen to the recordings: http://www.owling.com/Barred.htm
Anyway, now Laura and I are watching "Frasier"...it's always fun when she sleeps over, despite the fact that she constantly reminds me she's my gift of life! :) hahaha
Hope everyone is doing well!!!

Hi there!
Good news...I now have .002 neutrophils now....slowly but surely, right?! I also got some platelets today, and Thursday I'm scheduled to receive more blood. Luckily, I was able to get into the infusion clinic so I won't have to make any late-night trips to the hospital. :) I did receive a call from my doctor tonight saying that I am growing some organism in my line (catheter)...they will make sure that the antibiotics/anti-virals/anti-fungals will cover whatever organism it is. That just sounds so gross, doesn't it--"growing an organism"? I feel like a petri dish or something. I'm feeling well, but I mentioned yesterday that my line was a little red around the exit site under my dressing, so they took some cultures just to be safe. They think the redness at the exit site (which is very minimal) is just normal healing for the skin, and there was really nothing to culture from that, but when they drew blood from my catheter, it started growing something....ewwwww...I mean, that just sounds disgusting. They take the blood and put it in a little bottle that "has all the ingredients that bacteria need to grow" (I stole that from some medical site), and wait to see what happens. I think I will know more tomorrow about what type of organism it is and whether or not they need to add another medicine. Think good thoughts because I want to get rid of whatever this is and make sure there's no problem going forward with the transplant.
Not too much else is going on. Ronnie and I took the dogs on a nice walk again today, and we're all relaxing now. I hope everyone is doing well! I'll write again soon. :)

What a gorgeous day, huh? Ronnie and I plan on taking Jameson and Guinness on a walk once it's a little cooler out. All is well here--it was a bit of an eventful weekend (not in a fun way though, unfortunately! :) ). We got to the hospital Saturday a little after 8 PM, they drew some blood and then we waited (for the lab to type and cross the blood---each time, they have to draw blood to make absolutely sure they give you the correct blood type). By the time everything was processed and my nurse hung the blood, it was 11:30. It was really nice though because they were able to get me a private room on the oncology floor instead of having to send me to short stay. My nurse was great, and I felt well-cared for. I was just annoyed by the leukemia in general for ruining my evening (among other things!), and the whole process for getting blood (even though I completely understand), as well as the time of day that I had to go to the hospital, but other than that, everything was good. ("Aside from that, Mrs. Lincoln, how was the play?!!")  :) My mom always says this, and it cracks me up. Anyway, Laura and my dad stopped over to visit and brought dinner with them! That was a really nice treat, and it was deeeeelish! I'm having some leftovers tonight, and I'm looking forward to it.
Now here's where it gets interesting: sometime in the middle of the night, the nurse's assistant came in to tell her there was a bat in the hallway...yup, you read right--a bat!!! Apparently it was flying down the hallway, although it did go into one patient's room four times (don't worry...it wasn't me, thank goodness!!)...that poor patient. Can you imagine? Another patient's family members caught the bat in a sheet and took it outside squealing all the way (the bat, not the family members). My mom really made me feel a lot better during the whole ordeal when she said "I hope that bat doesn't flatten itself and sneak under the door because they can get into really small spaces, you know". Thanks, Mom. That makes me feel really good! No one knows how the bat got in there, but I'm guessing maybe he was looking for some blood too! :) hahahaha
I didn't sleep much at the hospital, and we got home around 5 AM Sunday. At 11, I had to be at my doctor's office, so there wasn't much time to rest. I tossed and turned and had horrible nightmares in rapid succession: all the doctors and nurses were mean to me in Seattle, there was a gigantic copperhead trying to attack me in my mom's truck, and the rest I can't remember, but they were awful nightmares. When we got to my doctor's office, I was starting to feel nauseous, so I took a Compazine. They drew my blood, gave me my shot of Neupogen, and I met with the doctor, but the nausea just got worse until finally I threw up. I felt so miserable, and I sat there thinking, "I really don't want to feel like this...I can't believe I have so much left in the months ahead."  I know I'm lucky because I haven't been nauseated much either time I've been sick (the only time I threw up in '05 was the same night my fever hit 106.8), but it's not much comfort when you are actually feeling nauseous.  I was worried that my new pill, Lexapro, caused it because I took it for the first time yesterday, but I didn't have any problems this morning.  As Tiso said yesterday, it would be more depressing to be throwing up every day (Lexapro is the antidepressant I mentioned in a previous post)!  

After getting sick, I felt much better.  I had requested a wheelchair for my mom to take me down to the lobby of the doctor's office before I threw up because I felt so blah.  This is only the second time I've requested one during both treatments (the other one was that same night of the 106.8 fever).  It feels strange to ask for one when I want to always try to push through any discomfort, but at the same time I have learned the limitations of my body.  The nurse still wheeled me down which was nice of her.  Everyone at the office is so kind, and I feel stronger having them on my team.  

I know this is a long one tonight, but hey, I've got stuff to share with you!  Let's see...what else...oh--when I got in Ronnie's car this afternoon to go to the doctor, there was a card sitting on the seat.  Let me preface this by explaining that there is one card that many people sent me in '05 because they know I love dogs...on the front, it's a picture of a Golden Retriever and it reads "As they say in obedience school", and on the inside, "Heal".  Ronnie was always cracking up that I got so many of these (I haven't counted, but there are lots!), so he started giving me this very card for my birthday, Christmas, and random occasions.  Anyhooo, I opened the card today and guess what?!---a totally different card!  haha just kidding...wouldn't it be funny though if I told you that whole story about the card and it had nothing to do with anything?! On the inside he'd written:  "Please don't throw up in my car".  And that's what I love about my family and friends--always able to find the funny in a not-so-fun situation!!  I'll have to count how many of these cards I have and get back to you.

OK, I guess that's enough for tonight!  You still reading or did you nod off?  :)  Oh!  I know...one more thing!  I have, drum roll please, .001 neutrophils today!!!  Woohoo!  OK, so it's not much, but it's something!  I get more platelets tomorrow morning...thanks again to all you blood and platelet donors out there!!!  I feel so lucky to have them available when I need them.  

Hope everyone enjoyed this beautiful Monday!

Getting all fueled up :)

Happy Saturday!

It looks beautiful out there---warm, but pretty.  I'm watching the Yankees game right now, wishing I were up in New York enjoying a hot dog and sitting in the stands....next year!  It's not as fancy-sounding as Ireland or Greece, but New York is definitely on my travel list, and I'm sure it will be much more feasible!  

Not much is going on here.  We've been waiting all day to hear from the hospital because I have to go in to short stay to get some blood.  They finally just called, and I'm due in at 9:30 PM tonight, which obviously sucks.  Short stay (and it's a misnomer 'cause by the time they type and cross my blood and give me both units, 8 or more hours could pass) is a unit in the hospital where they deal with all kinds of patients with any number of illnesses/injuries.  I have to go there instead of the infusion clinic because the infusion clinic is booked through Thursday, and I need blood now.  My counts took a huge drop yesterday, although it's expected because of the chemo.  Here's a baseline of what blood numbers should be, in case you're wondering:  white blood count 4.6-10.2, neutrophils 2.0-6.9, hemoglobin 12.2-15.o, hematocrit 37.7-45.0 and platelets 142,000-424,000.  I have a white count of .6, zero neutrophils and low numbers all around, although I was able to get platelets yesterday afternoon (they were 19,000 before the transfusion).  My hematocrit was 23.3 yesterday, so it's probably even lower today.  I have an uncomfortable headache due to the anemia, and I just feel blah.  Unfortunately, the chemo really affected my taste this time as well.  It's kind of a metallic taste, and it seems to be getting stronger...it even ruins the taste of Coke!!  You know how upsetting that is for me!  :)  But all in all I'm doing well...I'm sure I'll feel much better following the transfusions tonight.  It's really disappointing though because Laura and Tiso came over to cook my favorite dinner, watch the game and some movies and hang out...we've had it planned for a while now and it pisses me off that the evening's ruined by all this crap.  I know there's nothing I can do about it, but I was really looking forward to it!  I'm glad the hospital was able to fit me in, and apparently I'll have my own room which is important when you're neutropenic (especially when you don't know what illnesses the other patients have....in '05, I did short stay once and they put me in a room with a lady who had a wound that was draining!!!---even a non-medical person can understand you shouldn't do that!!)  

I haven't done too much walking lately because it's so disgusting outside, but I'm still dancing when I get ready so that's gotta be just as good!!  Another good one to dance around to is "Let My Love Open the Door" by Pete Townshend (an old one, but a good one!)  By the way, Yankees are winning:  7-2!!  Woohoo!  

Anyway, I hope everyone is enjoying their weekend!  I'm 'gonna go hang out with everyone before we head out to the hospital to get me fueled up (blood is so much better than coffee)! Hasta pronto.  

PS I just switched my national parks calendar to August and it's a beautiful photo of Mount Rainier National Park in Washington...what are the chances?!!  :)  Check out the website... www.nps.gov/mora ...when I'm feeling well, hopefully I can go visit!  My dad got me a book of hikes and walks in Washington, and I look forward to utilizing it someday--whether it's after my transplant this time or when I go back for a check-up...there are definitely some positives in doing this in the Pacific Northwest 'cause it really is beautiful (but I'll still always be an east-coast girl).  :)