Julie’s Blog

Happy, Happy Friday everyone!!

And, indeed, happy it is!! I woke up early this morning to shower (but of course I didn’t allow myself time to fix my hair—I just wear a hat these days. ) Hey, it’s hard enough to get me out of bed!! I went to have my blood drawn, to meet with my dr./pa/nurse team, and to go to my weekly pulmonary function study (a research study I signed up for). Well, when Jackie (my awesome nurse!) walked in the room, she seemed really excited and she shared the good news: my marrow is 100% Laura now, and there were no signs of recurrence. My blood counts are coming up for the most part. I asked why the numbers weren’t normal like Laura’s since they’re fully engrafted, and they explained that it was because her cells are baby cells, and they won’t be mature until around day 100 post-transplant, which is why they have you wait so long before coming home….to watch for any problems or GVHD that might arise.

They did notice the redness of my feet, and a little on my back, plus my hugely swollen eyes and nose. Yesterday, my PA was the same guy I had several weeks before my transplant and he looked at me and said “I know it’s been a while since I’ve seen you, but did your eyes always look like that?!”–my mom of course responded with “And what if they did!!” They are not sure if the eyes and nose are manifestations of GVHD, but I will go back in tomorrow morning to meet with the doctor. Hard to believe it’s day 31, huh?! I’m feeling a little less exhausted, but I look drugged, as you can tell. We’re working on this…it’s just not fair to have cancer take away your hair (well, I kept mine this year, but not last time) , prevent you from wearing makeup (for me, I don’t want anything that might harbor bacteria on my face, and make you swollen!! I mean, seriously, isn’t just the fact that I have—-excuse me—HAD cancer punishment enough?!! Get a good laugh at my eyes and nose, and be crossing your fingers that it goes away soon!!

By the way, just an interesting conversation topic: I was watching TV today, and I noticed a commercial advertising metal detecting as “the fastest growing hobby” in either the US or the world?!! hahahahaha Seriously?!!! Are you guys out there doing this and you haven’t shared the coolness of it with me?!!! I’ll have to get me a metal detector when I get outta here. hahahaha

My mom is doing well. She does so much for me, and I’d like to take this moment to thank her for being here with me through good and bad moods. I’d also like to apologize for my chronic lateness….I really am trying, Mom, and will be on time—-let’s start tomorrow. You always have to pick goals, right? Seriously, I will get my act in order here!!!

Keeping in the spirit of the day and all the good news (ie no sign of recurrence and being 100% Laura), have another listen to the Garden Song that I put up here a couple posts ago. Keep on maturing, little Laura baby cells!! http://www.youtube.com/watch?v=PmLzr1YSI9Y

This weekend, I look forward to spending time with Aunt Nancy, Aunt Barbie and Katie, and despite the weather we are going to celebrate life and what I’m allowed to do right now (eg restaurant-off hours; walking in the rain–one of my favorite things to do, and just the fact that we’re all here together).

Enjoy the photos….the ones with my eyes and nose are pretty rough, but this is the honest blog, remember? I want to make sure I share everything with ya! Don’t worry, if I develop any rash on my bum or anywhere else inappropriate, I will not be sharing that with you!!

Love from Julie and the beautiful Seattle night skyline.

Well, here we are closing in on day 28!! Can you believe four weeks have passed since the transplant? The doctors, nurses and my family all think I’m doing wonderfully which is good to hear. But to be honest, it’s also frustrating, because when they said I’d be fatigued, I had no idea what it would be like. I guess I was thinking to myself, “So I’ll be a little tired like last time with the chemo…no biggie.” but alas it is an all-consuming fatigue that I have struggled with every day since the transplant. Don’t be worried or anything, they all think it is normal and that I’m doing exceptionally well. Luckily they think I’m a “boring” patient (as my physician’s assistant said Friday when he and my nurse told me I would only be coming to the clinic a couple days a week). I’m glad to be boring and to be healthy (well, you know, relatively speaking). My social worker mentioned today that sitting around and napping does not go with my personality, so in that way, no matter what anyone says, I’m frustrated to be living like this.

I still try to walk almost a mile each day, although I took this weekend off. I also put on my yoga DVD today, but only as I lay down on the couch. I wanted to check it out before actually doing it myself. The lady’s voice made me verrrrry sleepy, so I might just end up doing relaxation for a half hour instead of striking various yoga poses.

I’m also frustrated that my eyes are constantly at half-mast because I feel like I look drugged. Yet, I know I have to be taking all the meds I’m on, and believe me, there are a lot!!!!! I feel like I can’t focus very well on what people are saying, that perhaps I have ADD…my social worker said it’s also common for people to feel this way. In fact, lots of people who love to read can’t do so for a period of time after the transplant because of everything going on in the body. I always love to read before bed, but I have no staying power!! Like I told her this morning, I feel like there’s a magnet in my body, one in my bed, and one in the couch, and I’m just magically drawn to those things while I’m in the apartment. I just can’t help it! So while talking with everyone about this frustration I’ve learned that 1)I should push myself, but only to a point…doing a mile a day is excellent for where I am right now, and if I can fit in some yoga, even better!! But, I also have to 2)listen to my body and rest whenever necessary. I honestly never thought fatigue could feel this bad, and I am so sorry for anyone out there who experiences this. I certainly don’t want any pain or anything bad going on in my body (I have a bone marrow biopsy tomorrow—-be thinking good thoughts!!!!), but feeling so incredibly exhausted feels almost like another illness on top of the leukemia. I will continue my walks and our searches for the cutest dogs in Seattle (it’s really a shame I can’t date here, ’cause there are lots of cute guys, lots of them have dogs, and here I am all tired, no makeup, with swollen eyes….now that’s pretty!!!!!) And you wonder why there haven’t been many closeups on the blog lately?!!! hahahahaha

Anyway, I’m in bed so of course the pillow is magnetically pulling my head downwards, but I wanted to include the following link to this video. I thought it was really touching, and I think I’m gonna pull off the same trick when I get home with the video….now I just have to find some good music…..they better be excited to see me, damnit!! Enjoy!

http://laughlines.blogs.nytimes.com/2008/10/12/the-dogs-of-warrior/?ei=5070&emc=eta1

I’m no soldier, but I was out here fighting my own fight, and I’m pretty sure I’ll get the same greeting once I head back to 7907 Oakshire. And speaking of soldiers, Happy almost Veteran’s Day (Nov. 11) to all of you heros: Tiso, Bill H., “Pop-pop” Matthews, Jeff G., Uncle Pete, Jeff B…..I know I’m missing a lot of people, but I’m gonna blame it on the chemo-brain ’cause I can’t think coherently for a long period of time!! OK, well that’s a bit of an exaggeration, but you know what I mean. To all you soldiers, thank you for everything you did and are doing for our country. I noticed something on-line the other day where you can “adopt a soldier”….sounds pretty cool! I didn’t get to read up much on it, but I think you have to write cards and send little gifts probably once or twice a week…just guessing, if it’s anything like the chemoangels group I worked with before getting hit with the big C for the second AND LAST time.

Anyway, enjoy the video, and lotsa love to everyone.

Julieara (we decided that was prettier that JuLaura).

It’s Wednesday night, and I’m looking forward to watching “Private Practice”, then hittin’ the hay.

OK, now it’s after “Private Practice” and I’m watching “Lipstick Jungle”…geez, what a tv bum I’ve become, huh?

Anyway, this will be a quick entry, ’cause I’m very sleepy right now, but all is well. My team told me yesterday that I am doing exceptionally well, that out of 60 or so patients they are treating, I’m number one in terms of health. My neutrophils, white count, etc are all coming up which is definitely a good sign!!

I’m just sitting here finishing up my 2nd infusion of fluids for the day. I do one in the AM and one in the PM. The bags have generic fluids, plus some magnesium and potassium to make sure my levels are normal. Oh! Also, they told me the only days I have to come to the clinic now are Tuesday and Friday! I no longer have blood draws every day! So that’s very good news, don’t ya think?!!

Sorry I’m not too inspired to write as of late…I just feel tired, so I take naps, but then I stiil feel a little tired. I’m still walking every day, and just taking this whole process one step at a time (like the pun?!! haha). The hardest is always making that final move from the couch to my bed at night….I mean, it takes energy to brush your teeth the right way and to change in pajamas!!!

I hope you like the photos below. My mom and I are hanging in there, and just taking it day by day. I know I’m not through everything and that anything can happen in the future, but I’m just counting down the days and doing the best I can. Thank God Mom’s with me to take care of me!!

Love from Seattle

Happy Day 20 to me!!!!! I’m like a little infant, no defenses against the world, adorably cute :), and quite the sleeper! Fortunately, I don’t have to relearn walking, talking, etc….that would certainly make this blog very interesting, wouldn’t it?!! “Poor Julie….she really lost it all with that transplant….I’ll keep reading those entries of gibberish ’cause, I mean, I feel sorry for her, but can you believe how much her language skills have gone downhill?!!” hahahahahaha

So after writing the last entry, Katie commented that I should include this article about Kathy being 1 of the top 40 under 40 in Richmond. Check it out….we are so proud of her! http://www.styleweekly.com/article.asp?idarticle=17938&letmein=1 She has made quite a contribution to the study of autism, and she makes a difference in the lives of each family she meets. I’m proud to say you’re my sister-in-law, Kathy!!

I had a wonderful weekend with my dad, Ronnie and Kathy. It was too short, but I guess that’s how every visit seems. I’m pretty booked the month of November, so I’m really excited about that! Maya, I was so excited to get your e-mail the other day–can’t wait to see you and Momma Nakamura!! It helps so much to see friends and family from home because they make everything seem more normal.

In other news, I opened up a bottle of iced tea the other day and learned that the life span of a tastebud is ten days! I was excited by that….let’s get completely rid of all these crappy tastebuds, and stock my mouth up with some good ones so that everything can taste normal again.

Also, Laura, you’ll be happy to know that mom has picked up several tips from the classes you taught on women’s self defenses. The other day we were on our daily walk when we passed this lady who wasn’t watching where she was going, she was on the phone, and she had absolutely no idea of her surroundings. Before I knew it, Mom yelled out “Now there’s the perfect target!!!” Indeed the lady was the perfect target, and perhaps Mom’s comment will help her realize how she could become vitimized, that is, if she heard it. I mean, she was seriously in la-la land between her phone and trying to walk.

Yesterday was the 33rd Marine Corps Marathon, and I wanted to say congratulations to Lauren and Bill, both of whom ran to raise money for cancer, Lauren for the American Cancer Society and Bill for the Leukemia and Lymphoma Society. I just wanted to thank you both. Lauren also ran a half marathon on Labor Day, and she and her friends wore “Team Julie” headbands…I loved those, Lauren! I actually only saw them a couple weeks ago because I hadn’t gone through all my e-mails. I loved the pics Laura sent out too from the marathon, but I’m not sure how to take them from Shutterfly and put them on my blog. If you have any pics you especially like, send them to me so I can put them up for all to marvel at your strength and perseverance. I am very proud of you! And I must say that although you and Bill said I helped to inspire you, I feel the same way about you two! When I was really exhausted, I would think “Man, how can ‘anyone’ ever run a marathon…EVER?” And then it started me thinking of Team in Training, and how I will join up again some day. It gave me something to look forward to, and doing that is how I get through each day.

Bill, thank you for running in my honor. It means so much to Laura, myself and all of the family. I’m looking forward to meeting you once I’m back on the cool side of the country. If you have any pics to share, send ‘em along, and I’ll make you famous on my blog!!!

Anyway, I better stop writing because my sleepy meds are kicking in and I should stop writing before I stop making sense. Thank you to everyone for what you’ve done for me, but today I want to especially thank Lauren and Bill. Make sure you go get some nice massages–you certainly deserve it!

Lots of love from Seattle,

Julie

Helllllo there, everyone! It’s Day 17, and my counts are starting to come up! My white count is 1.34, not normal, but Laura’s cells are doing some seriously good work and they’re generating some cells! My neutrophil count is .35 (or 350), so Andrew, you might win that contest!!–I bet they’ll be around 500 on Monday!!! Sorry we can’t give you that all-expense paid trip!!

Anyhoo, my dad got here last night and Ronnie and Kathy came in this afternoon, so I’m really looking forward to this weekend. I’m still very tired, but I saw my team today, and they all think I’m doing wonderfully which in turn makes me feel a lot more confident. I mean, I do know that I’m doing well, but it feels really weird to walk almost a mile and have my ankles or legs feel a little bit sore. And it feels strange to just always give in to the sleepy feeling and rest. My mom reminded me that getting a bone marrow transplant is actually like being a new baby, what with my immune defenses and everything…and babies take lots of naps, so it’s OK if I do. Sounds like a good explanation to me!!!

My show is going to come on soon (”Wheel of Fortune”), so I better hurry! Basically I’m feeling good, just tired and my eyes are constantly puffy…they don’t know if it’s just ’cause I’m tired or it’s a combo of being tired and taking lots of pills, but they’re not worried about it. I’ll include a couple pics for you to see my day today.

Hope everyone is doing well!!

Lots of love from….where else?
SEATTLE!!!!!!!!

Hey there friends and fam,

So I’ve been pretty zonked the past few weeks. We go to the clinic, come back and I rest, take a walk for about a mile, then I rest, we have some dinner, I take a shower and then I rest again…and then I go to bed!!! How bout that for a schedule? But seriously, the doctors say that I am doing “magnificently”, and today my white count was 590! My neutrophils are up to 60…..neither are good numbers, but they are great for me! It looks like my counts are on the upswing, which is a good sign that Laura’s cells are starting to engraft. I still have to get blood tomorrow…it always takes longer for the hemoglobin and hematocrit to come in.

I’m feeling a little more energetic today…I have all these funny things I want to write and share with you, but I”m not quite up to all that craziness! I’ll be up and blogging like a pro within a couple weeks. Enjoy these photos. I’m gonna go……take a guess!………rest and take my pills! I can’t wait ’til I’m back to myself.

Love from Seattle.

 

Julie is feeling a little “blah” as she says, so I’m going to write an entry for her.  She has been going in daily for screenings and to have her blood drawn.  Yesterday she received platelets, she has some white cells now (I believe 200 but am not entirely sure?) and she was told on Friday that the doctors think she is doing “outstanding”!  She is having difficulty sleeping through the night and the metallic taste is still bothering her.  My Mom said Julie ate some eggs with toast and a glass of milk the other day and tonight she requested Mama Matthews’ Meatball Supreme (it’s delicious!)  Hopefully her tastebuds will return soon and she can enjoy her “Coca-cola” (as she calls it)–one of her favorite treats.

We are all so proud of Julie and her positivity, courage and strength.  I also am proud of her writing on this blog–I check it daily and love not only her writing style but also her honesty.  

My Dad and I took Jameson and Guinness to Mason Neck yesterday and they had a very special message for Julie:

Jameson and Guinness send their love!

 

Julie is concerned because she has gotten a little behind on her blog entries. For that reason, at her request, tonight’s note is from her dear old mom. (Somehow I imagine that the eyes of all you readers have begun to “glaze over” when learning this news!) Don’t worry, she’ll be back at her computer soon to dazzle you with her usual fun and informative records!”

Today is day 9 since her transplant and she continues to impress her doctors, nurses and family with her strength and positive attitude. She takes MANY medications throughout the day—some have to be taken with food; some on an empty stomach and some should not be taken anytime close to the ingestion of dairy products. She has difficulty with food due to a horrible metallic taste and a dry mouth from the TBI (total body irradiation). It is difficult to balance the medications with the food—–especially since chocolate milk and macaroni and cheese seem to be two things that are appealing to her. She has informed me that I must be careful not to NAG her about eating.——the nutritionists here say not to nag about eating but be SURE that the patient takes in enough daily protein as it is essential to regaining strength, etc. Get the picture???? I have started to hum my own little tune. Remember The Garden Song? I think John Denver and maybe Peter, Paul and Mary sang it. (Our family liked Tommy Makem’s version (I think you’ll love it!): http://www.youtube.com/watch?v=PmLzr1YSI9Y . We spent many winter nights listening to Tommy Makem at a bar in Maryland (over the course of years…he used to always come in December), and his death was a huge loss. MY words are ‘Inch by inch, row by row, gonna make those stem cells grow—all it takes is a nag whose a pro and a lot of love and prayers.” That is the only verse I have finished. “I’ll get back to you.” with the rest “you betcha”! Just hum along during the day–wherever you are. Maybe it will help Julie!! And it’s the perfect song to match Andrew’s analogy in the comments on a post from October 6 (”Day Minus 2–all systems go!!–I’m totally stealing that from you, Andrew!”).

Laura left today–it was hard to see her leave. You can’t just say, “Bye, Laura. Thanks for all those cells!” Laura and Ben (Tiso) were extremely supportive these past two weeks. What a blessing to have them here with us. Although Laura had a few tough days with nausea and vomiting, she bounced right back and was a real help. (She does still have quite an ugly bruised area on her left arm though!)

Thanks to all of you who read ]ulie’s blog and who support her in so many ways. She isn’t talking on the phone or writing on the computer as much right now but each day will bring new energy so she will be back to her post SOON. We are so very thankful for our family, friends, neighbors and co-workers. All of you give all of us the strength to get through these challenging days.

Love and blessings to you all,

Carol

P.S. Don’t even ask why there are no damned pictures on this blog. This is a senior edition!

Hola! I’m not going to write much now, ’cause I’m pretty tired, but I’m doing OK. I just feel blah. I take anti-nausea pills before eating or taking my other pills, and I feel exhausted all the time. I was able to go on a walk yesterday and today, but I was still happy to see the couch each time we returned. I haven’t returned many phone calls, so don’t be offended!! Once I’m a little more energetic, I will do just that!

My mom and I were watching a movie that made me teary, so when it was over, I thought, “well, let’s not waste these tears” and I thought I’d do a little crying over my own situation, but I didn’t want to upset anyone. I know they’ll come again, and I will probably indulge myself then.

Now, don’t be thinking that I’m all down and depressed. I’m sad to be in this situation, and I feel a bit imprisoned here in the apartment, but I’m OK. The most annoying thing right now is the horrible metallic taste in my mouth. It ruins everything….I feel like I’m always thirsty, but there’s nothing that can quench that thirst….the only thing I’ve discovered that tastes half decent is chocolate milk…I can’t wait until I can eat and drink whatever I want to and actually taste it!!!!

Whew! Felt good to get that out!! Well, I’m ‘gonna get ready for bed. Laura and Tiso had a wonderful time celebrating their anniversary tonight, and she has beautiful pictures that she’ll be posting on the blog!

I hope you are all doing well!

Lots of love from Seattle

Here’s what a typical day is like for Julie out here on the West Coast!…well, not “typical”, Julie was especially tired/not feeling well today.

After the popsickle, Julie ate a little mac & cheese and then took a shower.  (But I didn’t take any photos while she was showering, I thought that’d be a bit much!)  Anyway, today she rested a lot and kinda took it easy.  She is beginning to feel pretty exhausted, but somehow maintains her awesome spirit!  We love you, Julie!  Love & warm thoughts from Seattle, Laura  

P.S. Also see the post below…I posted TWO posts today for Ms. Julie!