Evening update

It’s funny – even though I’m off the chemo and feeling much stronger, there are times when I just get wiped. There was something important I really wanted to write about but my brain is just a little too “wet” tonight to write it, whatever it was … the thought has completely slipped by.

Got platelets today. No worries about the frequency – I was concerned at first that I got them at the beginning of the week and needed them again at the end. These are the last to recover and the chemo is still working in my body so it’s not surprising or alarming.

My numbers are trending so that I’ll probably need blood tomorrow but I’m hoping that maybe the chemo is being so effective that the body will start to counter act that. That’s me trying to be positive. But generally, the trend in the numbers don’t show enough of an effective up-tick in the numbers for me to really be certain that I won’t need blood at some point this weekend.

It’s interesting also that I can feel when I need blood. Platelets, I can’t feel when I need; I just need to look at the numbers. But blood – that I can feel. And I’m starting to ‘feel’ that.

OK – so many people have asked what numbers are we actually looking for on the blood chart. I’ve been struggling with discussing this. Mostly because the target numbers we’re looking we’re not reaching and I don’t want people to freak out about this and think that I’m getting worse instead of better. I am documenting the numbers but really won’t discuss the thresholds we’re aiming for, but I will definitely let you know when the numbers start to trend in the positive way that we’re looking for. Right now, though, it’s still too early to expect the trend we want to see. This will take several months for my body to recover, but there is a road to recovery that is understood even if the specific next steps aren’t yet known. There are so many what-if scenarios, that to go through them all is just not practical, but I do understand them and truly believe in my doctors’ abilities for healing and treatment.

So I’m looking forward to getting out of here. Don’t know when that will be, but actually participated in a work conference call today and felt like I was able to do some work which was really important to me. The head of the Oncology division came by to visit today and she told me the more I can schedule to things like that – even if it is just 15-20 minutes a day right now – that’ll it will be good for my body too to turn from the general malaise that comes from physical exhaustion and mental retardation (don’t misunderstand me – I’m not brain damaged, but the chemo has effected, and continues to effect, certain coginitive abilities in terms of duration, but this recovers too — it’s just a little pronounced now.) Interestingly enough, I can still play gin and Scrabble with my mom from time to time and am still able to win (at Scrabble) and play competitively in gin (read, lose). 🙂

Soooo … this entry is a little longer than I thought it would be. That’s a good thing. Hope everyone is well and my deepest appreciation for all of your support.

Strength and love,
Seth

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5 Responses

  1. Hello my dear…thank you for the update…you write so well and I really “hear” you when you speak…your team of doctors seem so amazing, and so attuned to YOU and your needs…that is such a blessing.

    It is good to hear that you are keeping on with your work…that too is such a connection that is, I am sure needed, although in smaller doses to allow for the “real” work of healing to be done. But I am also grateful to hear how kind you are being to yourself, to allow yourself to be in whatever moment or feeling you need to be…and to be so in touch with your body functions and needs that you follow those instincts. Therein lies your strength and your capacity to heal.

    I think of you often and I miss our “midnight” chats…but I know we will have those again very soon…I also hope you got the photos I sent…more will be forthcoming…Hugs and Kisses to you and mom…

    xoxoxoxoxoxoxoxoxxxxxxxxxxooooo

  2. Let your Mom with a game of Scrabble once in a while 🙂

  3. Seth –

    Thank you for the updates – they really mean the world to me, and allow me to feel connected, while so disconnected.

    Of course and needless to say my thoughts, prayers and heart are all with you. I too look forward to when you get out of there – and my trip to Philly at that time will truly be a joyous occassion!

    Lots of love and refua shleimah (never been good at those transliterations!)

  4. Heya Seth,

    What you say about being a little forgetful reminds me of a recent article l read about ‘chemo brain’. It mentioned all of the things you said were happenning to you but also went on to mention that the experience of ‘chemo brain’ lead the survivor, upon full recovery, to be sharper than ever due to their increased awarness of how important cognitive skills are… Good heavens! Make way for the glittering cognitive supanova!!!

    Has ‘Russell’ arrived yet?

    ox xo

    Steve

    SP> Thanks, Steve. Definitely something to look forward to. “Russell” has not yet arrived — I’m not sure who that actually is. 🙂

  5. Beating your mom at Scrabble? Ha! I will get out to Philly at some point — maybe even in the next month — and then you will have to take me on. Better practice!

    Bonnie

    PS — Dad was glad he got to see you last week. He and Mom send their best, as do Dave, Marc, Ed and Peggy, and our friend at the Bureau and her significant other.

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