Saturday, December 19, 2009

Day +46 - Coffee

I accomplished my very own milestone this week... no discharge papers or follow up manuals list this milestone, but for me, it was self-imposed and significant. I started to drink coffee again. After 2 months without any java, that warm, brown, slightly bitter drink tastes like heaven. Green tea has been a nice change, and I have tried them all... blueberry, pomegranite, mango etc.. but coffee is my true love and it is great to have it back in the mix.

I am now scheduled for doctors visits just once per week, which is terrific as I was originally told I would need to visit 2 - 3 times per week for the first few months post transplant. Dr. Chen feels as though for now, the GVHD is under control. I had my weekly follow up on Thursday and blood counts all looked good, liver enzymes are stable (still slightly elevated) and my rash appears to be much improved. They have slightly reduced my Prednisone again (to 40mg / day) which is a welcome relief. All other meds remain unchanged.

I am still under careful watch for infections though as the medications I am taking further reduce my immune system, so as originally told, I must stay confined to my home with limited visitation, however, I am able to take walks outside and can drive a car.. another major milestone accomplished this week, but I just cannot be around people due to possibility of infection. So, I can drive, but I just cannot go anywhere, which actually translates into... I can drive Ha places and then wait in the car. But as I described to her, I actually have grown to enjoy this. It allows us to spend some time together, and after being confined to a hospital room for a month and then our home for another month, sitting in a parking lot, makes me feel like an indoor cat, watching birds fly around outside, which has been oddly appealing these days. :)

Our house is full of all types of holiday festivities. We have been lighting a menorah each night and Mai and Tal love predicting which candle will burn out first. We have a number of Christmas presents all wrapped up, ready to open on 12/25 and I often hear Mai and Tal singing the Dreidle song and Christmas Carols throughout the house... we are truly managing a multi-ethnic household and it seems to be working for now.

Things here are still a bit upside down, but Ha has been juggling our household responsibilities with such grace and efficiency, it feels like we are starting to regain glimpses of normalcy. With barely a minute to spare each day, she did however manage to purchase a rare antique swiss made Elna sewing machine online and claims it was the best deal she has ever found. If you have never seen Ha's antique sewing machine collection, and are interested... I guarantee you will be impressed. All we need now is an antique barn to house her growing collection, and the dream would be complete.

So, this week has progressed well. We remain careful, and cautiously optimistic, but we are enjoying our time together and hoping our good luck continues. Thanks again for all of your well wishes and enjoy the snowy weekend.



  1. Ron You have developed a new talent. You truley know how to recharge your friends and family. You have such a knack for bringing us all down to earth and back to reality!!
    It IS the little things in life that we take for granted each day that really mean the most. Whether it is simple foods we eat or drinks or a strole in the car....looking at it from another angle really brings us back to perspective...keep turning us on and recharging us....I laugh ...I cry...I LOVE IT!!! I am so happy this was an up week!!
    Deff a great way to send off the old and bring in the new year...Love Angel

  2. My mind rests easy when I hear that there's been a new sewing machine purchase;) So, so happy to hear about your progress, Ron. Enjoy the coffee, and all the other every day things that are returning to you. And thanks for reminding me, as I sit here surrounded by a billion little plastic containers of homemade Christmas-scented playdough to be given out and fretting that I haven't yet bought a goat for my dad via Heifer International, what is truly important. Happy Hanukkah and Merry Christmas to all of you!


    Fran, Steve, and Lucy

  3. Happy Channumas from our house to your house! Ron, your are our channumas miracle!
    love and hugs,
    the Minios

  4. So, you make everything seem so close to normal that I dare to ask this question - Does Ha ever sew anything on these collected machines? I have a sewing machine in the garage that is definitely NOT a collector's item and I'm supposed to use it for sewing - but... well... if she wants it, she's welcome to it. Merry Happy everything!
    Love, Laura

  5. A decade ago next week we rang in the new millenium together. On New Year's Eve this year we'll think back a decade ago and be grateful for you, our families, and our health.

    love gary and lisa