Written by JKM on January 9th, 2009

It’s Thursday! I only have a week left!!!

Angel Flight West called and confirmed that we have a flight on the 15th (originally they thought it would be the 16th, but there was nothing available that day, and we’re fine leaving a day earlier!). Isn’t that exciting news? Exciting, scary and wonderful. I’ve already explained my mixed feelings to you, so I don’t need to drone on and on, but suffice it to say that I’ve been very contemplative lately….about Seattle, about my transplant, my home, my family and friends, and just life in general. As I wrote yesterday, I just keep reminding myself to take things one day at a time.

I feel bad because my mom and I have been snappy with each other, but I know it’s the stress of packing everything up and “cutting the cord”, as I’ve heard many people say about the SCCA. It’s also the stress of preparing to get back into everyday life, especially for my mom because she goes back to work after this. I don’t have that to worry about right now. It’s hard for me to articulate my feelings; I’ve been grumpy (only with my mom though—I guess because I feel most comfortable with her, and I know she loves me, no matter what), but I can’t explain why. I think it has to do with various factors: leaving Seattle, the city life and the adventures we’ve had here; leaving the clinic where I know everyone is an expert on bone marrow transplants, and knowing the clinic is only a 15 minute walk from our house; packing (is anyone especially cheerful when filling up boxes and using that annoying tape that folds back onto itself and then you can never find the end of it again? :) )…really, the list could go on. On the other hand, I am soooo excited to come home, and I can’t believe it’s been so long.

Which reminds me….I think I need to warn you all about what I look like right now. =) I was looking in the mirror after taking my shower tonight, and I thought, “This is ridiculous…I should try and pluck at least the darkest hairs”, so I just plucked a few, but then I bled (a verrrrrry tiny bit), so I stopped. So here’s the thing: I have a mustache–there’s no mistaking it—it’s dark and it’s there!!! I have eyebrow hairs that have grown in between my eyes ’cause I normally pluck/wax and I haven’t been able to lately. I even have a couple little hairs on my nose and chin. AND hair is growing in from my hairline to my cheeks. To me, I look like a monkey….ok, it’s not that bad, but just be prepared because I don’t look like how I did when I left VA, and I don’t look the same as when many of you came out to visit. My cheeks are also puffy as you’ve seen from the photographs, but it might be more shocking in real life. I won’t be like this forever. In fact, tomorrow is my last day of Prednisone, so hopefully the cheeks will go down soon. As far as the hair, I might be on the Cyclosporin until April or May or even longer, depending on how I’m doing. There, I’ve given you fair warning, so you’re not shocked when you see me!!! :-)

On a much more positive note (I should have started the blog with this!), my cytogenetics results are back, and everything from my last bone marrow looks great!! No sign of any abnormalities, and I’m still 100% Laura! Also, the skin biopsy was negative for GVHD. I had my last appointment with Victor and Sam yesterday–they worked with the respiratory study I signed up for, and my mom and I always enjoyed talking to them every week, even if we were there for them to flush out my nose, swab my throat and measure my lung capacity. :) I will be in contact with them over e-mail though because I continue the study by myself at home.

Today, I met with my team, and Peter (my PA) and Jackie said I’m their favorite patient! I’m going to miss them (not just ’cause they said I’m their favorite), and I know they’re favorites of my mom as well. I guess now I’ll have to start looking forward to October when I come back for my check-up, huh?!

I was just going over some of my meds because my levels of Cyclosporin and Magnesium keep changing. Anyway, I thought I’d share with you the medications I’m on because I don’t think I’ve done that before, and I think it’s important in understanding my life as a transplant patient. Sometimes I think I make it sound too easy, and although I’ve been extremely lucky with my health, I do try very hard to be a good patient, and one of the many challenges that comes along with that is managing my many medications. Here goes:

Cyclosporine (6 pills a day); Prednisone (almost done!!); Valtrex (2 pills a day); Bactrim (2 pills on Monday and Tuesday); Multivitamin without iron (yup, like a senior! :, 1 pill a day) ); Xyzal (sinus stuff, 1 pill a day); Lexapro (1 pill a day); Nasonex (nose spray, once a day); Protonix (1 pill a day); Magnesium Oxide (12 pills a day); Viactiv (1 yummy chocolate chewy a day); Yaz (birth control pills, although not for that reason…my doctor prescribed them as an alternative to hormone therapy so that I get more regular amounts of estrogen in my body…there doesn’t seem to be much hope that I’ll ever regain ovarian function, which is upsetting, but I’ve had lots of time to digest that. It doesn’t make the situation any better, but I’m alive, and that’s what matters. There are certainly many children who need happy homes, and someday I hope to adopt).

Anyway, I got sidetracked…there are a couple more pills: Fosamax (to reverse the osteopenia and osteoporosis)–I will start that this weekend; Vitamin D (1 pill daily); and Ativan (2 pills nightly to sleep). I’ve been doing a magnesium iv as well every day, but this weekend we’re going to see how I do without it…cross your fingers!! And that’s it!! It takes me about an hour every Saturday to put all my pills in the pill chest for the week.

Fun post, huh? hahahaha I guess I better try and get some sleep…it’s 12:45 AM and my mom and I have appointments to get our hair cut tomorrow…I know I desperately need it–I feel like my hair’s turning into a mullet! Wouldn’t that just top off my hairy, puffy look!! Oh, ps, I’ve gained 15 pounds while I’ve been here, so I’ll look a little rounder in general, so you’re prepared. :)

OK, seriously, I’m off to bed. I hope everyone is doing well, and I’ll put up a more exciting, uplifting post next time!!!

PSS I AM happy and proud of my body because of what it has been able to do…to take the chemo, iodine, radiation, Laura’s cells, the medications and use them to rid my body of leukemia and start a brand new immune system….I try not to forget that when I complain about my hairy face and everything.

Lots of love,


10 Comments so far ↓

  1. Jan
    Andrew Colletti

    One of the many, many cool things about the coporate flight is you don’t have to do all the security stuff and I trust that you’ll walk directly from the plane to the car when you get back. And it’s luxurious too, just what Susan and now your Mom deserve. A little high-society treatment. Just a week to go!

    I empathize with your mixed feelings about cutting the cord. I also remember being stressed that I was leaving “the simple life”. But I didn’t have a doggie to come home to!

    Maybe I’ll see you at the pulmonary clinic. My annual lung function test came back with some slippage so Dr. Chinn (did you meet him out there?) wants me followed with PFTs and maybe a CT scan.

    I’ve not yet met a patient who has done better than you, Julie, or who had more support. It’s been a joy to be able to look in on you via the website and I’m glad you’ll keep it going.

    You’ll be coming back to very cold weather here–the coldest of the season so far. But would you mind bringing back some SNOW to to with it?

  2. Jan
    Judy Graul

    Julie, so glad to hear you are coming home. Jameson and Guinness are so excited you are coming home, they have been so full of energy this week and I know its because they know their mom is coming home. I just wanted to let you know that while you were gone they made you something and it will be waiting for you when you get home. I will not be there so I wanted to welcome you home now! I am going to meet my first Grandchild (Madison) she is coming into this world on Jan 16 by a C-section. Isabel will be taking care of them while I am gone. I hope you have a great flight home and are ready for lots of love, licky kisses and some very happy doggies. I look forward to seeing you when I get back on Jan 20th

  3. Jan
    KEN fort Lauderdale Florida sunny 74

    We all are so happy to see you get back to normal life.It wont be long in till spring will arrive in Fairfax station.That i do miss living in south Florida

    Also i know you cant wait to see your dogs,You are to funny with the monkey comments,

    Have a great flight And get ready for things to back to normal..

    You did it,,,,,


  4. Jan
    Norma Tuminaro

    Julie, can’t wait to see you and your mom. Bayla can’t wait to see you too. Hang in there…you will be home before you know it. See you soon…..

  5. Jan
    Katie aka Frank :)

    Just think, a week from now you’ll be at home! You can play the piano, watch Frasier on a BIG screen tv :), play frisbee with the dogs, sit by the fire, snuggle with the dogs, take a walk by the creek, and SO much more. We’re all looking forward to your return!

  6. Jan
    Laura (AKA the donor)

    Wud up, you little monkey! ;) CAN’T WAIT FOR YOU TO COME HOME!!!!!!!!!!!!!!!!!!!!!! :) :) :) I’ll be picking you & the other Momma-monkey up from the airport, so I’ll need your flight info. Love to you both!

    P.S. Try not to think about missing Seattle too, too much…you know we’ll make it a point to include that city among our special destinations & continue to travel out there until we’re old & grey! :)

  7. Jan

    Time to put on Simon and Garf.’s “Homeward Bound”!!! Last dose of the evil prednisone???? Congrats on that (and I was really happy to read that they have you on Vit. D). Don’t worry about what other people think (although so easy for me to say). Everyone has read what you have been through and are so proud of you and what you have done. If they judge you for something that you have no control over- well, that just speaks very highly of their character. (Plus they would have to deal with an ass-whooping from a long line of people.) I’m proud of you and want to be just like you when I grow up.

  8. Jan

    Julaura! We can’t wait to see you back at home, hairy face and all…=) Now that it’s wintertime in VA, you may even welcome the extra body warmth! Bring your appetite with you, since Brant’s looking forward to cooking for you - and we just bought a little TexMex cookbook, so we can try to make a Tres Leches cake. So many things to look forward to - including a long, healthy life filled with all of your friends and family…have a safe trip home and we’ll see you SOON!

  9. Jan

    Seriously? Doo you think any of us care what you look like? All we see is an amazing person that just kicked cancer’s ass (with style, I might add!) Besides, I agree with Maya that the extra pounds and hair will help keep you warm!!!! :)

  10. Jan

    I liked reading about all your meds. Seriously, that is a mother-load! You are a champ, Julie!

    Just 3 more days for Seattle Team Matthews -hooooray! I think Laura has the right idea about helping you to not miss Seattle too much. Instead you can try to turn those thoughts into anticipation and excitement for your next visit there, yeah?

    That corporate flight sounds AWESOME! I totally forgot about the not-having-to-deal-with-the-airport-stuff, both departing and arriving. Bonus!

    Can’t wait for you two to get back home!!!!

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