“Lifetime” in Seattle

Written by JKM on December 17th, 2008

You know…”Lifetime”, the women’s network? The gals in my family have a long-standing relationship with the network, especially around the holidays. You know, I think if the network weren’t called “Lifetime”, perhaps some men would like the shows too!! After all, I watch “Spike” sometimes despite the name. :)

OK, now it’s Tuesday, and I am 31!!! Guess I’ll have to change the “about me” section on the blog, huh? I woke up early this morning to a beautiful, clear day! My mom served me some delicious pumpkin bread and coffee, I opened gifts from Laura and Katie (and I love them all!!!!), took a shower, and got ready for my day.

We were at the clinic from about 9:45 AM until 1 PM going to different appointments: blood draw; team meeting with my Dr., P.A. and nurse; chest X-ray; meeting with my social worker; and meeting with my nutritionist. They are very happy with how I’m doing, so all good news! Unfortunately, I have gained some more weight…nothin’ crazy, but I spoke a lot with my nutritionist about different suggestions, and she isn’t worried at all about the weight gain, especially since I’m still on the Prednisone. She said the main thing is that I’m eating and drinking, and as long as I make sure I’m getting protein, a some type of grain, a fruit and/or veggie with each meal, I’m doing well! BUT she said not to expect to do that all the time, especially this time of year! I love meeting with her because I’ve always had questions about food and how best to use it to energize your body. I asked her about starting a food log, but she said to wait ’til the Prednisone is completely out of the picture, and only if I really feel like doing it. So that’s that!

By the way, aside from being the most wonderful day of the year (my birthday), today is day 70!!!!! Hard to believe in the early fatigued days (remember, magnet on the couch and bed fatigue) that I would ever feel this good, and I would be out and about in Seattle (you know, relatively speaking….restaurants on the off-hour, outdoor activities, shops where there aren’t too many people).

Oh, I know what I forgot! I took the ZGF (architects of SCCA) book into clinic today to show Jackie (my nurse) and the rest of my team. My P.A. especially loved it, so he’s going to keep it for a week to check out all the beautiful photos inside. I’m really going to miss my team. Jackie has stayed the same throughout the months, and we love her! But we’ve also gotten to know Peter, and other doctors and P.A.s, and every single one is pleasant, knowledgeable, thorough and reassuring. Of course, I am excited to get back to my doctor in Virginia, but it’s been nice to meet some new friends out here.

I know, I keep harping on about missing Seattle and the changes to come, but I’ve been thinking about it frequently, so you’ll have to pardon the repetition. :) I guess some people may not think of it this way, but after cancer (or any other traumatic event, I imagine), if you look normal and you’re doing well, everyone assumes things are back to normal. So many emotions are involved…I love Seattle and the city life, feeling healthy and having my own space, but I miss Virginia and my dogs, cat, friends, etc, etc, etc. My life is forever changed by leukemia, but you can’t tell it from the outside (well, once the hair and puffiness are gone). You all know what’s going on on the inside, because I’ve basically put all of it up here on the blog, but I guess there is a a fear of getting back to “normal”, and leaving my safe “bone marrow center” haven, the SCCA 3,000 miles away.

There, I said it! I’m afraid. It’s weird because I’ve done so well, and they expect me to continue to do so, but it’s scary to leave the cocoon of safety I feel here, and the life my mom and I have created, albeit a mini-version of one. Some patients might read this and think “What a crazy girl!! Why on earth would she be worried about going home?!”, but we’ve spoken with others who feel the same way. You just can’t duplicate the SCCA; it’s all about the organization, the friendliness of everyone, the feeling that EVERY PERSON in the clinic knows what’s going on with you.

Geez….listen to me droning on. This was supposed to be a light blog!! But I guess, since I am technically a year older, perhaps I’m becoming more of a thinker………..nahhhhhh, can’t be that!!!

I hope everyone is doing well!

Enjoy the pics. :)



6 Comments so far ↓

  1. Dec
    Laura (AKA the donor)

    Well hello there!!! :). Its been a while since I’ve been the first responder to one of your posts…how does it feel to be 31? :) (just like 30 I imagine, although I won’t know what that’s like for a few years since I’m still a baby in my 20’s!) ;)

    I think it’s perfectly normal for you to feel anxious about leaving Seattle, and I think a lot of the other patients feel the same way! But push that anxiety to the side & get your butt home! :)

    Glad you had such a nice birthday! We were all thinking of you! Love you, Laura

  2. Dec
    Andrew Colletti

    Bone marrow is so fundamental to your health that I say you just adopt Laura’s age and birthday as your own. This strategy would not work for me since my donor is 12 years older than me. But having kids knocks you back to your 20’s so there are numerous ways to deny one’s age!

    I so relate about leaving Seattle. The SCCA is one big security blanket so it’s hard to leave for that reason. And it was hard to come home because that meant the simple life was over. Suddenly there were car repairs, 3 times the vacuuming, driving distances to the dr., and all the other mundane things. But heck, you’re alive so there IS an upside :-)

    Seattle does get into your blood, though. Pun not intended.

  3. Dec
    Norma Tuminaro

    Love those PJ’s…Happy Bithday and 31 is not old. Believe me. Like Laura says push that anxiety to the side and get home. Can’t wait to see YOU and even your MOM :)
    Merry Christmas

  4. Dec
    Susan Colletti

    Happy Birthday, Julie! Does Laura get to celebrate a “new birthday” on your birthday since she’s in your blood?? :-)

    I check your blog daily and I have to tell you how much I for one LOVE the pictures! I have a special place in my heart for Seattle too, and I love seeing all the pics and hearing about your adventures. I thought it was so great to live in another place for 5 months — how many people get to really do that? It was a very memorable time for us and I am very nostalgic for Seattle. I also had many fears leaving Seattle, even though I was the caregiver and not the patient. It was hard to leave the safety of the SCCA cacoon. I remember talking with Andrew’s nurse about it — she said almost everyone feels that way. So you are definately not alone. You do have a great doctor at home though, so you can be assured that you will be well cared for. AND after spending all that money with the SCCA, they give you lifetime access to their long term follow-up group! They are WONDERFUL! Always available - just a phone call away. We’ve used them many times just to get a second opinion and ease our minds.

    So thank you for your wonderful blog, your Seattle travelogue, all those great pics, and for sharing your “adventure” with us all! We pray for you and your family often!

  5. Dec

    As I was reading along in Andrew’s comment and got to the 2nd sentence, I thought he was going to say, “This strategy would not work for me since my donor is 12 years old.” That made me laugh… picturing his behavior reverting back to a 12-year-old’s. Probably his wife and co-workers would not think it was so funny.

    Love the new pj’s! Do you get shocks when you walk on the carpet? I remember that happening a lot when I was little.

    Re returning home to VA — not to worry. We will make you a special sign to wear around your neck that reads “Precious Cargo. Handle With Care. People: I Am 3000 Miles From My Cacoon!” :)

  6. Dec

    Happy belated bday Julie!! We got your bday card well in advance, and of course, it’s still sitting on our coffee table…classic Nakamura/Horio-style! Anyway, glad to hear you had a good day - and deep thoughts come with being 31, when we’re finally old enough to handle (or at least ponder) the ‘portant stuff. =) Lots of love and hugs - can’t wait to see you back in VA!

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