Julie’s Blog

Happy Monday!

So we’re getting down to the wire here…one week from tomorrow is the first day of appointments for Laura and me. Corporate Angel Network will contact me tomorrow regarding a free flight out to Seattle, so I’m keeping my fingers crossed! It says that they only take one other passenger with the patient, but I’m hoping to convince them to take both Laura and my mom with me! I’ll let you know how it goes. If it doesn’t work out, my mom found a flight that leaves Sunday evening and arrives in Seattle around 11 PM their time. I just want to stay here in Virginia as long as possible to hang out with everyone.

And speaking (or technically, “writing”) of hanging out, my family surprised me this weekend with a party. Laura contacted a small group of my closest friends, and they came out Saturday night to visit and wish me well on my trip to Seattle. Ronnie did a good job of distracting me: he asked if I wanted to go on a walk with him, Jameson and Guinness. We went the long way, but I told him on the walk that I wouldn’t be able to make it to the entrance of the neighborhood because I wore my flip-flops, and they weren’t comfortable enough to do two miles. We walked to the bus stop of our neighborhood, and he prolonged the walk by saying he wanted to see what it looked like on the inside, so we walked in, looked around, he pointed out some graffiti, and we went on our way. When we got back to the house, it was transformed! There were streamers, signs, balloons, and my parents, Laura, Kathy and Katie were all standing in the kitchen sporting orange leis (orange is the color for leukemia awareness). They yelled “Surprise!” and at first, I thought we were celebrating Ronnie’s birthday early since I would be gone, but they all seemed to be looking at me. I asked “for what?!”, and then I figured it out. I’m a little slow. Friends started showing up about an hour later, and it was a really special night. I wanted to share with you a beautiful poem that Laura wrote and then read to me when everyone was there. I was very touched, and I know this poem will find its way into my books as a bookmark, and it will be quite worn by the time I get back here to Virginia in January.

“Julie,

We’ve gathered here tonight to wish you well as you leave for Seattle,

We know you will fight hard and we know you will win this battle!

As your prepare for your journey out west, we know you’ve got a lot on your mind,

We know that once you get there, good doctors, nurses and courage you will find.

We know you will welcome every rainbow that shines after the falling rain,

Strength, good health and triumph we’re certain you will gain.

We know you will fight through this with gumption, humor and smiles,

We’ll be right there beside you, or sending well wishes across the miles.

You are truly an inspiration, the way you always find the good even in the bad,

The way you’re able to remain sound when many others would be mad.

We know 5 months seems overwhelming, the road seems windy and long,

But you’ve gotta do what you gotta do in order to again be strong.

We love you, we’re in this with you, we know you will persevere,

Now hurry up and beat this so we can celebrate in Ireland with beer!”

I didn’t quite know what to say after listening to her wonderful poem. I think my emotions are kind of dulled right now, and I feel like all my feelings are waiting to come out when I leave for the airport. Sometimes the tears will come when I’m alone or after Aunt Bitsy leaves (she stayed through yesterday and we had a wonnnnderful time!!!–I credit her with bringing up my counts. )…they also sometimes come after Ronnie, Kathy, Katie, Laura and Tiso leave too. Even though I know I’ll see them again, and even though my parents are with me, the house gets too quiet after a weekend of laughter, teasing and general loudness (is that even a word?). The important thing is that eventually the tears stop, and I am able to focus on other things to distract me. I just keep looking at the next several months as something I have to plow through. I have no other choice, and I have no better option for a cure. There’s no point in feeling down the whole time because that would just be unpleasant for me and everyone around me. Again, I really feel like the Lexapro is helping me in this area because my anxiety level went down a lot in the past few weeks. I feel pretty proud of myself for trying to find all possible ways to help me get through this…the relaxation CDs (thanks, Margaret, for bringing me your favorite the other day!! I know it will be a great help out in Seattle), a new yoga DVD, a counselor and Lexapro (aside from my friends and family—but that’s not something I had to find…all of you have always been there). I didn’t think I needed an anti-depressant because I wasn’t feeling like I couldn’t get by without it (that’s a lot of double negatives!–my English and Creative Writing teachers would not be proud!!). I figured the situation was difficult and I responded as anyone in my shoes would. Then I discussed it with my family and my counselor, and it seemed like Lexapro would be sort of like a crutch to help me through this time in my life, and I’m glad I have it in my arsenal of items to help me be strong enough to beat the leukemia again.

Well, this is pretty long (as always!), but as always, I have lots to get off my chest. Lori and I started packing yesterday…well, technically, Lori did most of the work. I was overwhelmed by the whole process and was easily distracted by little jobs like picking out the books I wanted to take. I also found several recipes my mom has been looking for the past year or so…oops! I put them away with other recipes I wanted to copy, and then I forgot about them…good thing I’m sick so my mom can’t get too upset with me! hahaha just kidding, she would never get too upset with me, but I think the fact that I’m sick makes her less likely to yell.

My numbers today went down a little bit, I think because Aunt Bitsy left…she is my good luck charm for blood numbers! Actually, the white count and neutrophils probably went down a little because they stopped the Neupogen shots Friday. Those are meant to give me a white cell boost, so once they stop giving me that, I think my own marrow has to work a little bit more to get the cells churning out. My hemoglobin and hematocrit went down a little too, so I’ll probably find out tomorrow whether or not I need blood. I do have a headache right now that feels like it might be an anemia-related headache, so I’m hoping if I need blood they can fit me in to the infusion clinic this week. My platelets are holding pretty steady around 33,000, so that’s a good sign. Hopefully they (along with my other counts) will start going up soon!!! I keep telling my bone marrow that it doesn’t have to work too much longer, so it should try and get its act together and give me some freakin’ cells!

OK, I’m getting a little tired, so I’m going to sign off! I think I might have a delicious bowl of Frosted Flakes before heading to bed…don’t be jealous!!!!! By the way, some people have asked for my address in Seattle, so here it is: Pete Gross House, 525 Minor Avenue North, Apartment 606, Seattle, WA 98109.

Think good thoughts for my numbers tomorrow! Good night!!! Below are some pics from this weekend…enjoy!

Love ya.

Happy Saturday, everyone! All is going well here on Oakshire Lane. The weather is beautiful, although a little hotter than earlier in the week, and I have lots of company this weekend! Ronnie, Kathy, Katie, Laura, Tiso, Aunt Bitsy, my padres and the dogs, of course! Also, my cousin Mike came down with Karen and their sons, Jake and Ben. We had a wonderful afternoon, as you can tell from the photos. It was so good to see you guys!!!

So, I don’t get Sunday off from visiting the doctor’s office because they want to monitor my platelets (today, they are 30.4,000), but my other numbers are looking great! Here’s the breakdown: white count 5.27, neutrophils 3.86!, hemoglobin 10.5 and hematocrit 29.1). Not bad, huh? Kathy joined Aunt Bitsy and I at….guess where?!!!! Yup, IHOP for another delicious breakfast (we went yesterday too!). This morning it was chocolate chip pancakes for me and pancakes with a brown sugar sauce, bananas and ice cream for Aunt Bitsy…mmmm…sounds good, right?

In addition to these wonderful (for me) numbers, I don’t have to take my prophylactic anti-fungal, anti-viral or antibiotic meds. I don’t want to get too cocky yet, but I feel good, so I’m hoping any infections just stay away!! I’m still taking my Lexapro and Xyzal (for allergies) every morning and then my Ativan every night to help me sleep, so I’m not completely free of pills, but that’s OK.  They’re helping me and that’s all that matters!

I was quite happy to be given the go-ahead to go out in public (and to hang out with Jake and Ben too!). Aunt Bitsy and I went to several stores yesterday to celebrate my freedom. It may just have been Petsmart, Safeway, Ulta and the hair salon, but I had a wonderful time! I think Aunt Bitsy is a good luck charm for my counts. She also helped bring the owls out!! We were pretty hard-core last night…we stayed out a bit even though it was thundering and it started to rain. Although we didn’t see any owls, we heard them, but now I’m wondering if my mom’s right…perhaps a neighbor across the creek put the same owl sound on his cd player and plays it in response to ours. I don’t think so though—I know they’re out there!! I fully expect them to come out and give me a good send-off before leaving next week.

Laura is making dinner tonight, which I’m sure will be delicious. Tomorrow Lori will help me start packing, and I’m nervous, but I know she will help get me organized and keep it lighthearted. Thanks again, Lori!!

Hope you all enjoy your weekend!
Love ya.

Hi there, everyone!

Today was a great day for so many reasons, but let’s just start with my counts. My white count is 2.1, and my neutrophils are 1.2! Tomorrow I probably won’t be neutropenic so I can actually go out!!! WOOHOO!! Once my neutrophils reach 1.5, I am no longer considered neutropenic which is a wonderful thing! By the way, under “pages”, on the right side of the blogsite, you’ll find a key for blood numbers so you can easily refer to it when I talk about my counts. Ronnie also included the speech I gave last year to Inova blood donors (don’t worry–I don’t go on forever! I think it’s 15 minutes long or maybe 10). Hope you enjoy it! I do get a little sappy at the end…I figured that way everyone would donate more. hahahaha just kidding…it was an emotional speech to give, so I was pretty proud I didn’t tear up until the end! Hope you can still understand me.

Getting on with my day, I enjoyed visiting with Arjun and Brenda, AND Aunt Bitsy!! Yup, she surprised me yesterday when I was in short stay at the hospital. She’s staying through the weekend, and I’m glad my numbers are up so we can head out to our restaurant of choice, IHOP, and I can put all the weight on that I lost while being neutropenic (it’s not much, just five pounds)! Then, this evening, my mom, dad, Aunt Bitsy and I headed over to have dinner with our friends, Norma and Steve (I can write your first names in the blog, but it’s too hard to break away from calling you Mr. and Mrs. Tuminaro since I grew up doing that!). We enjoyed some delicious homemade lasagna, as well as salad, garlic bread, chocolate cake and…………………… wine!!! I asked the nurse practitioner if it was OK if I had a little wine, and she looked for any reactions with my Lexapro (that’s the one that says “no alcohol” on it), and she said she thought a little bit should be fine. She did say I shouldn’t “get stoned”, so that was quite a disappointment, but I’ll adjust. hahahaha Thank you for the wonderful dinner and the company, Mr. and Mrs. Tuminaro (there I go again…it’s habit, I can’t help it!)!! It was a very special night.

Tuesday night, my mom, the dogs and I went to Laura and Tiso’s house, and we stayed out on their beautiful porch all night long!! It was such a gorgeous night, they had the fire going in their cool chimenea, and Laura made chicken cacciatore, which she didn’t like, but the rest of us did. That too was a special night, and I took some pics to share with you…actually, I have lotsa pics, so I’ll go ahead and put them in a gallery right now before I forget. By the way, if you want to enlarge the picture, click on the photo, then click again on the next photo that comes up.

Short stay went really well yesterday. I had wonderful nurses, and despite the fact that I was there from 11:15 AM until 10 PM, it was very pleasant. I took a couple naps, watched the Olympics, visited with my mom, Aunt Bitsy and Lori, solved one and a half Sudoku puzzles (it only took me almost two hours to do it–those are freakin’ challenging–and I was doing the so-called “easy” ones), caught up on some e-mailing, and refueled with platelets and blood. While I was there, I got a call from the Pete Gross House (check it out here: http://www.fhcrc.org/patient/support/pghouse/), where I’ve been on the wait list for an apartment in Seattle, and they have an apartment that will be ready for me when we get there! It’s apartment 606, which I think sound like lucky numbers to me…now, if it had been 666, that would be a different story!!!! Anyway, it’s a big relief to know we don’t have to find a hotel while we’re waiting for an apartment to open up.

Anyway, this week has been a great one, and I’m looking forward to a wonderful weekend. I might get a break from the doctor’s office this weekend too! I love talking to everyone there, but it does get tiring going back and forth, and it’s always a a good sign if I don’t need to go.

I was cracking up today because Aunt Bitsy said that the big patechia by my collarbone looks like a hickey (or “sucker bite”, as she calls it)….I never even thought about it, but it does! You can see it very easily, but I figured…hey, just let people wonder! It sounds like a lot more fun than just plain old patechia!

OK, I’m gettin’ sleepy, and I’m sure you’re getting tired of reading, so I’ll sign off. Hope everyone is doing well!! I’ll write again soon.

Here I am—new blog, but same wonderful posts. Ronnie set this up for me because I kept complaining about the asethetics of the other one. Apparently it’s for “advanced bloggers”…that’s me, all right, advanced!!! hahahaha I defer to Ronnie and Katie whenever I have any computer problems, but I’m learning…slowly but surely, right? I was playing around with the different features on the blog, and I decided to dedicate this first post to “a day in the life of Jameson and Guinness”. I hope you enjoy the photos!

They have a pretty good life, don’t you think? I’m really going to miss them and I know they’ll miss me, but I’m sure everyone will spoil them.

I’ve started taking videos with my digital camera, so when I start missing home while I’m out in Seattle, I can just flip open the laptop and see the sights and sounds from home. I got some good ones of the the pups playing yesterday, and I took one at night just to hear all the bugs (not that you can see anything!). I took one of the backyard, but unfortunately there weren’t any owls or deer or anything at the time. I’ll have to catch them in action before I leave.

Speaking of videos, I also ordered a yoga DVD to help keep in shape out in Seattle since I won’t be allowed to go to any classes! I hope it’s good…I was looking through the options and I thought, “well, I definitely won’t be up to doing power yoga, and I don’t need ‘yoga to lose weight’”, so I found a nice normal one, “yoga for every body”…I’ll let you know if it’s any good! I also ordered one of my very favorite movies, “Saving Grace”. If you haven’t seen it, you should definitely check it out! It’s hilarious and also heartwarming. Just make sure it’s this movie http://www.bestprices.com/cgi-bin/vlink/794043514227?source=adwords and not the tv series or anything.

Anyhoo, in health news, I’m doing well. I feel good, and my white count is .8!!! Neutrophils are .2, so they’re on the rise. Unfortunately, my red blood cells and platelets aren’t on their way up yet. I’m visualizing lots of cute little red circles with top hats and canes jumping into my bloodstream so I don’t have to get blood tomorrow. If my red cell count doesn’t go up, I will unfortunately have to go to short stay at the hospital (which, as I’ve written before, means long stay and is not fun at all) because the infusion clinic is booked up all week!! So think some good thoughts for those cells and you never know what will happen!!

Tonight my mom and I are going to Laura and Tiso’s house for chicken cacciatore…yuuuummy! I think the dogs will come along as well, and they love going over there, so it will be a nice treat for them.

Two weeks from today will be my first appointment for the pre-transplant workup out in Seattle, and as it draws closer, reality is setting in. I keep reminding myself that I will be back here in four and a half months, but of course I’m still nervous. Part of me worries about the possibility of not returning home, and I try to not dwell on worrying about dying, but this whole process is dangerous and there are no guarantees. I think the Lexapro has helped calm me down, but I still think about it. I’m not afraid to die, but I’m definitely not ready. I hope this isn’t upsetting anyone, but when you’re facing a disease like cancer, death certainly crosses your mind, and honestly it makes me feel better to talk about it and share my concerns. After I was first diagnosed, I thought more about what should happen if I die, and I wrote down my wishes for what I would want at my funeral (music, flowers, photos, etc.). I have a really good feeling about the transplant, but I can’t help but worry every so often. I have so much to accomplish and experience, and I plan on doing so with Laura’s marrow!! My ipod was on shuffle when I was getting ready this morning and my favorite hymn came on: “Precious Lord, Take My Hand”…not very danceable, but it did prompt a little discussion with God. I told him, no offense, but he better not be trying to take my hand any time soon. I think he heard me.

Also, since I’m listing my worries, I’ll add a few more. I sound vain writing this, but I’m worried about how my appearance will change if I have to take steroids following the transplant: will I get the “steroid round face”? Will I gain additional weight? It’s not a big deal in the scheme of things, but adding body image worries just doesn’t seem fair when I’m dealing with other more important things. Maybe someone out there is working to fix those side effects as I type! Anyway, it’s not a big deal, but I just wanted to pile all my worries into this first new post. Don’t be discouraged…I’m still positive, but I’m trying to make this experience as real to you as it is to me…no censoring!

Let’s end on an up note…a year from now, I’ll be healthy and getting ready for my favorite season of the year, I’ll be looking for a job so I can plan my Ireland trip, my hair will be growing back (everyone tells me the Fludarabine will definitely cause me to lose it), I’ll be with family and friends, and most importantly I can start dating! hahahaha OK, it’s not the most important thing, but it’s up there!!!

Hope you like the new site!

Love ya.