Day 50

As I’ve been learning through most of this illness, whatever complication can be simply described is usually not quite as simple as it would seem. Same thing for side-effects. Come to think of it, describing these outcomes in only the most simplest of ways is common-place and probably easiest to do because the manifestations of variations on what can happen are probably so numerous – they’re certainly unpredictable – that to get specific about anyone one thing before transplant could take an entire day’s lecture in and of itself, unlike the kindly 4 hour lecture we got before this whole process started.

Good morning! I finally decided to write something for the blog.

It has been an incredibly hectic time. But I am astounded that I now have someone else’s immune system in me. Of course my own immune system and nouveau-immune systems are not loving each other and I have had complications – nothing life-threatening, but serious. This is called Graft vs Host Disease and actually it’s not a bad thing to happen as it helps to establish my new immune system and help the body adjust. I’ve been fortunate that I haven’t had the most serious of complications, but complications just the same that have made the past several weeks somewhat unpleasant.

Not important to get into the details here, but in general, my GVHD has complicated my diet, my skin, body strength and I’ve had some fevers and bacterial growth. All of which are being handled and with the exception of bacterial issue, the issues are clearing up nicely (if slowly).

Mom has been doing a stellar job keeping up the blog and with calls and such. She went back to NYC to take care of things for a day or two and I think promptly collapsed and napped for most of the day — a well deserved respite. And although I know it’s taxing on her, I have to ask that we still go through her for a lot of communication – I’m simply not strong enough to email everyone or to talk on the phone just yet.

Many thanks to everyone especially for the comments – I read them regularly and just love them so please keep them up!

Strength and love to everyone,

Seth

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19 Responses

  1. Wow, just great to see you are back on the blog. Keep growing stronger.

    Love,
    Phoebe & Fred

  2. GOOD MORNING SETH,

    IT IS GREAT TO SEE THAT YOU ARE ON YOUR OWN STEAM WITH THE BLOG. IT GIVES ME HOPE.

    I AM FAR BEHIND YOU IN THE TRANSPLANT PROCESS, HAVING JUST FINISHED MY CHEMO CONSOLIDATION ROUND AT FOX CHASE TEMPLE BONE MARROW TRANSPLANT CENTER IN JEANNE’S HOSPITAL. I AM HOME AND GOT GOOD NEWS YESTERDAY, THAT A DONOR HAS BEEN FOUND FOR ME. SO, I SUSPECT, THAT THE TIME IS NEARING FOR MY TRANSPLANT. I HAVE A CLINIC APPOINTMENT MONDAY, AND MAY FIND OUT THEN. RIGHT NOW, AFTR THE CHEMO, MY COUNTS ARE DROPPING WHILE AT HOME, AND PROBABLY BY MONDAY, I WILL, ONCE AGAIN, BE NEUTROPENIC. I AM PUSHING THROUGH THE DARK TUNNEL, AND LOVE READING YOUR BLOG WHICH HELPS TO GUIDE MY COURSE. WITH A REALITY CHECK.

    KEEP GETTING STRONGER, AND I PRAY FOR YOUR RECOVERY EVERY DAY.

    MIKE

  3. GREAT MORNING SETH,
    WHAT A WONDERFUL WAY TO START THE DAY….IT’S YOU….REALLY YOU….A TREAT..A PRESENT…A JOY…
    YOU ARE AMAZING….HOW OFTEN I THINK ABOUT YOU WHEN LITTLE EVERYDAY THINGS POP UP…YOU ARE AN INSPIRATION AND A GUIDING LIGHT.
    SENDING YOU CONTINUED PRAYERS FOR STRENGTH HEALING AND PATIENCE……AND MORE BLOGS….
    BIG HUGS…BERNINC

  4. Hi Seth – good to see/read your “voice” again, though your mom has been doing a great job, and I can’t help but feel quite a bit og affection for her through all this.

    I am at a Starbucks in Soho as I write this, and as I was walking down Broadway I was struck by how how bad I feel that you’ve had to go through all this. There will be a day soon when you feel young and healthy and overwhelmed with a wealth of options rather than the lack of them, and decades hence you’ll think of 2007 as the year you were sick a lot. But I think you’re a bit of a hero for fighting so hard and putting up with everything. There’s something contagiously life-affirming about it is good for all of us.

  5. Dear Seth
    you made my day to read the blog written by you, I never lost faith that you would be back on the blog now be able to read your email because I sent some to make you laugh.
    keep up the good work
    all my love Aunt Barbara

  6. Dear Seth a PS are you up to changing your Hebrew Name
    Love again Aunt Barbara

  7. So glad to hear your voice through the computer screen. I am so happy you are doing better. While it has certainly been a long and winding road I knew you would pull through! You continue to be in my thoughts and prayers. Hope you get some good food soon to help you on the rest of your journey.
    All my love and support,
    Beth Levine

  8. It is very emotional to read your blog and to comprehend that you have reached this point. What a blessing. Seth, you have all my admiration. nothing from your early diagnosis to now has come easily but your determination and your strong will has certainly payed off. So so happy for you.
    Continue to improve and of course to blog!!!
    love, hope and courage
    gail

  9. It is so good to see you posting again. We are thinking of you always and sending good wishes from Atlanta. Your strength is an inspiration to everyone.

  10. I’m sitting here both crying and kvelling. I’m so happy we’re reading the blog in your own words, although Karen has been spectacular. Be well and please know how much we all love you.

    Drew

  11. Sorry, can’t stop to type. Too busy joyously dancin’ around the loungeroom singin’ ” I will survive”
    ox

  12. Welcome back, Seth! Your return to the blog, even if sporadic for the time being, is a wonderful sight. Glad your mother got a chance to return to NYC for a bit because that too means you’re improving.

    Stay the course – your progress is becoming more evident to all, and we all share in your joy and applaud your fortitude. What a remarkable young man you are…

    Marci

  13. Holy cow – it’s my Daddy himself typing on the blog! Welcome back Daddy so very wonderful to “hear” your voice!

    Very thrilling to read that things are moving forward and that it has reached a point where Grandma feels she can take a nap.

    Look forward to reading your personal comments more, and hearing good things, but as has been writtn here before, we are all very thankful to read any and all updates, we take the good with the bad and just thank G-d that the good outweighs the bad!

    Licks and hugs,
    Voodoo (and Lenna and Brian)

  14. What an awesome surprise to open the blog and see a message from you personally! You’re almost there kiddo, hang in there!! You’re gonna owe your mom tons and tons and tons of flowers and fancy dinners in the New Year!!! 🙂 Hugs! – B

  15. Seth,
    Welcome back! It is so great to see your posting.
    Sending you lots of good wishes and support!
    Wendy

  16. SETH DEAR
    HOW GREAT TO READ YOUR POSTING
    THANK YOU FOR TAKING THE TROUBLE TO EXPLAIN THINGS
    IT IS OBVIOUS THAT THE ISSUES YOU HAVE FACED ARE VERY COMPLICATED AND YET YOU HAVE MOVED THROUGH EACH CHALLENGE WITH COURAGE AND STRENGTH
    HOPE YOU AND MOM WILL GET SOME DAYS AHEAD WITH LESS STRESS AND MORE JOY AND MORE GOOD FOOD …
    EVERYONE IS SENDING YOU POSITIVE ENERGY AT LEAST I AM AND OF COURSE MUCH LOVE
    HI TO KAREN
    BARBARA

  17. What a delight to see an update in “your own hand”. I/we have been hanging on every word posted/said, fully realizing that even a small update requires so much energy.

    I hope you are feeling better and better. Seeing a message posted personally by you feels like a major milestone on your path to recovery has been passed.

    Wishing you more strength all the time.

    Neil

  18. OK, the first giveaway that you were back on deck was the change in color scheme… 🙂 not the colors per se but rather the FACT of change. SO HAPPY TO SEE IT! Sending strength and thanks at this thankful period. We miss you – get strong so that I can talk your ear off soon.

    C xx

  19. So glad to see you back to blogging — Karen does a great job, but we are glad to hear your voice. It sounds like you are through the worst of it and soon enough you will be home with Voodoo planning your world tour!! Until then, keep getting stronger!

    Bonnie and Dave

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