On to round 3 …

The last round of chemo knocked the leukemia down from 80% to 60% – a good improvement, but not what we were hoping for. Also, my brother, Alan, is not a compatible bone marrow donor.

The way forward is clear now:

  • I will spend the next week to 10 days in hospital as some of my blood and physical strength recovers; specifically, we’re looking for my ANCs to get up to 500 (we were slightly encouraged today that my platelet count went up on its own as did my hemoglobin, but due to a processing error earlier this morning with my first bloods results in 6.6 for hemoglobin, I’m actually getting a transfusion today).
  • When my numbers have sufficiently recovered, I will be able to return home! The length of the stay is still unknown right now and will depend on my numbers and the type and frequency of care I’ll need when I’m not in hospital.
  • I return to the hospital for a month’s stay for a third round of chemo. This will involve the double dose of Ara-c.
  • Then we have a break for a while – not sure how long, at least 4 weeks. I don’t know if I’ll be able to be at home for part of that.
  • Then the bone marrow transplant. There are subsequent steps after that, but we can hold off on those details right now.

If you are interested in becoming a bone marrow donor — and who knows if we’ll be a match??? — please visit http://www.marrow.org. That is the national marrow donor program and has a wealth of information on what the program is and how typing and matching work. If you register online, they will send you a kit. You can also do it in person at a local donor center. Also, speak to your doctor about how to do this if you are otherwise unsure. To be blunt, I cannot survive without finding a donor so we need to get as many people registered as possible; my family are least likely matches, so I have to reach out more to friends, colleagues, clients, etc., and hope that somewhere out there there is a match for me.

The likelihood of me finding a match in the registry is 70-80% (the percentage is based on ethnicity).

I am finding all of this a lot to take in right now. While the road forward is now better known, we also now know better a number of the risks: outside of the hospital, it will be more difficult to control exposure to potential virii and other bacteria – I will have to be very careful. I still basically won’t have a life and the road to recovery is going to be much longer than we originally thought.

You know, when they told me the results of the 2nd bone marrow biopsy and it wasn’t good I was noticeably emotional with the doctor that night. Last night, my mom showed her emotions and she was crushed. But I have to tell you, that even though I still am of the belief that I didn’t come to Philadelphia to die, that I’m somewhat emotionally barren right now and not entirely moved by this news as I was the last time.

It’s very bizarre. I’m angry that I have leukemia. I’m angry that I’m just one big science experiment. I’m angry that I have to put my life on hold for a long time and don’t even know when I’ll get it back. I’m angry that I had to lose my father now of all times! But I think I’ve spent every other emotion of being sad and scared that all I have left is this lingering anger and animosity. That’s not good and I know I need to work on that.

Maybe I exaggerate a bit – I’m still sad. I’m rereading this entry and making edits and can’t help but be teary-eyed. The reality of the situation is just so extreme – you don’t expect or plan for something like this. You know – in the beginning, the attending physician used to say that I need to think of this as an episode of the The Outer Limits … where they control the horizontal, and they control the vertical. But I’m wondering who is the sadistic son of a bitch who’s writing the fucking script.

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14 Responses

  1. Ran into our London comrad Lisa M this morning. Wanted to send hugs, kisses, and warm fuzzies your way from rain soaked LI. Fingers and toes are crossed for a bone marrow match. Thinking of you!
    xo, Jill

  2. Hi Seth,

    The twists in turns in your life are absolutely astounding. Best wishes as you recover from this mess. I’m looking forward to your blog with snarky comments on the emergence of new internet technologies, rather than this stuff. With all that you’re going through, you deserve the next 50 or 60 years of your life to be cartoon-silly and full of joy.

    Best wishes,

    –Kevin Littlefield

  3. No creative words I can come up with but for you to know how much your friendship over the years has meant to me. You are as unique of a person as each sunrise brings a new day. My love and deeps prayers for you – I’ll see you in a few hours

    xox
    Brian

  4. Hello sweetheart!! Keep up the good work. One more lap. Did you get our photos? I have a question. Does the bone marrow compatibility depend on blood type??? If so, what is your type? Thinking of you. I will email you personally soon. Much love, Elisa

  5. Sweetie,

    I will send out a call to EVERYONE I know in Toronto. If ethnicity, i.e. Ashkenazi is important, I will stress that. We will all be typed here, in hope.

    As for being at home, bring on the face masks if you need them, whatever you need. I WILL be there for our fantabulous movie extravaganza. I also found completely devoid-of-all-real-eggs Hollandaise sauce mix. A poor substitute, I know.

    love,
    a

  6. SETH DEAR
    I UNDERSTAND THE GRAVITY OF THE SITUATION BUT I AM SURE THAT YOU CAME TO PHILADELPHIA FOR A GOOD REASON!!!! I WILL SPREAD THE WORD ABOUT THE NEED FOR A BONE MARROW MATCH A MATCH WILL BE FOUND !!!!
    I AM GLAD THAT YOU ARE KEEPING US POSTED BOTH YOU AND MOM ARE REMARKABLE!!!
    I SEND YOU ALL MY LOVE AND PRAYERS
    STRENGTH AND LOVE
    BARBARA

  7. Seth,

    Work overload had led me to narrow my comms input to work email. As a result, I have suddenly been hit by the overwhelming events in your life.

    I don’t have anything intelligent or emotionally inspiring to say. All I can do is say that I am thinking of you… hoping you will recover from the leukemia… admiring you for the strength you are showing.

    I hope I don’t come across as trivial in recommending you ways to pass your time… when you need to take your mind off things, give a try to the BBC’s podcasts (in particular From Our Own Correspondent, Broadcasting House and In Our Time) and the podcast book novels by Scott Sigler (if you are into Sci-Fi/Horror) and J.C. Hutchins (for Sci-Fi/Thriller)… all on iTunes

    Warm regards

    SP: Thanks, Rodrigo

  8. Please be patient and hang in there my dearest, and when you are down and , angry , just know that all of us are holding you up in prayer. I will check on the bone marrow sitch asap.

    Much Love Always
    Marla

  9. My heart goes out to you at this trying time in your life. I have already e-mailed EVERYONE I know and asked that they be tested. Together we will find a donor! Not a day goes by that you and your family are not in my heart and in my prayers. I love you and can’t wait to see you. You know I have aways hated my hair so maybe I should shave it off to show my support! Keep strong! Sending you positive energy.
    Love,
    “Beth”

  10. You are amazing. Your attitude and spirits will keep you going for a long time. I’m thinking of you and again my prayers are with you. I will investigate the bone marrow progrom. Love Cousin Andrea

  11. Seth-

    I belong to NYCA with your mother. After just reading about your situation I will definitely get myself tested to help you or anyone else who needs a bone marrow transplant. Thank you for your blog and explaining many things about that.

    Not to blow smoke anywhere, but a smile every day will do amazing things for you. I promise. If you can’t laugh about something a smile will do. Fake one if you have to. I find them contaigous myself. I am sure you have been told by those close to you that attitude is everything. If you want to tell me where to go and what to do with myself that’s OK too. I understand.

    With Love,

    Rick

  12. Seth –

    You are the most amazingly composed and well put-together person I know. I am absolutely certain you will be through with this interruption in the proper time and then you’ll look back on it as just that – an interruption. Like it or not, you have a long future of not yet ready technologies and overambitious and unrealistic clients and bosses to deal with. Plus a long future of the joys and pleasures that had made up the life of Seth Palmer and will make up the life of Seth Palmer.

    Regards,
    Mike

  13. Keep your chin and spirits up! (Also because it can cause the dreaded double chin!)The odds are good of a match and the transplants are very successful. My uncle had one a couple years back and he is busy running around the left coast living his life.

    I am going to get tested tomorrow morning and will give you the scoop once I have it. There are only two testing centers in Missouri, but luckily one of them is here in town.

    If I roll into scenic Philly in mid-April, will you be allowed a visitor? I am working with our favorite federale to coordinate.

    Dave and I are always thinking of you.

    Bonnie

  14. My darling,

    I just got some info on getting typed. There is a place conveniently located at 2 Park Avenue (33rd Street!), and all they need is a swab on the inside of my cheek to check for tissue type. Results come in after three weeks.

    FOR ANYONE READING THIS: the risks involved are pretty negligible; the greatest “risk” is the general anesthesia itself. Other than that, it’s just discomfort. While anyone being typed would be doing this for Seth, we would join the national registry and be on call until we were 60 years old. Call 212-209-6702 and ask for Nicole Marshall — she was very helpful.

    As for you, Seth darling. See you on Saturday. You know if it weren’t for Neil, you’d have been on the hook this Friday, when I hit 40!!

    Love,
    me

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