There’s going to be a round 2 of chemo

So my first round of chemo didn’t get the results we were hoping for and I need to have a second round of chemo to try to bring my counts down even lower. Until we get the results of this second round of chemo, we won’t know if I’ll need a bone marrow transplant, and the doctors are only planning two weeks out right now. However, in anticipation of that transplant need, they have already started typing me. At this point, no one needs to do anything along those lines. We still have to get through the next round of chemo, which will last 7 days, and then another 7 days of rest at which time they’ll do the bone marrow biopsy to determine how effective the treatment was.

This is going to prolong my stay here in the hospital a little more than I had hoped. And when we first got the news of the results of the first round of chemo, I was crushed. But I’ve taken the past few days to get myself together and get ready. I’ve tried reaching out to other oncologists in NYC to seek some objectivity and a 2nd opinion (not that I don’t trust my own doctors here, but I don’t know what I don’t know so I don’t know all the questions I need and want to ask and I’m overwhelmed with anger and frustration). Overall, most doctors have to specialize in this kind of leukemia before they give an opinion, and from what we heard, I am in the best possible place for that and there really isn’t anyone else I could seek out outside of this place that would know more or better how to treat this. And that has greatly reassured me.

I have my up and down moments. In the morning, I’m up, awake, vivid and can accomplish quite a bit. From about 6 until 9, I’m great. At 9, I start to wind down a little and I coast through most of the day. By 2 or 3, I need to rest. Dinner time, I’m good, I eat, I’m able to do some stuff, but it really has to be mindless. But by 9pm, I’m done. And it’s usually at this point that I feel saddest or most depressed or most anxious or most worried. At 10, I take the sleeping pills and that lulls me to sleep and the cycle starts again. I think it’s important that I realize this cycle and share it because now you’ll know the best time(s) to try to catch me by phone or online.

Today my hemoglobin is low so I’m getting a transfusion. I’m already feeling the effects of the low blood this morning – it’s a dizzying kind of effect on the whole body. Makes my head swirl a bit. Unlike getting platelets, though, I won’t need Benedryl to knock me out for the transfusion. So I’m just waiting on the blood and will need to stop writing soon because I feel other effects coming on now also – spots in my eyes, irascibility (or is that just part of my normal personality? 🙂 )

So that’s all for today’s update and the update on next steps. I’m enjoying reading everyone’s comments on the blog and getting emails and the pictures and cards and notes and postcards. Please keep ’em coming, it’s what really gives me my strength. And if you’re itching to send something more to help me pass the time – magazines are good – travel, gadgets, technology … I wish I could get through the Atlantic Monthly or Harpers but my concentration just isn’t there. Also, I posted an entry right before this one with a link to a list of DVDs that I would like to have.

Love and strength to you all, and many many thanks.

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4 Responses

  1. I know it’s hard to hear that news, but the doctor’s there are looking out for you. Hang in there Seth!

  2. Remember…it’s always darkest before the dawn….hang in there my sweet…you are amazing, wonderful…and cute to boot! If you need me I am there….if you need a bone marrow transplant let me know…I assume I can be typed here in LA and of course I will come to Philly….keep writing, keep praying and know that you are loved truly, madly and deeply…..xoxoxoxxo

  3. The way you do this thing, this staggering ability to be so wildly lucid and objective… utterly amazing Seth….Wagner pehaps too? Many people in Australia, dear dear friends of mine, read your blog and refrain from comment due to feeling like they are invading your privacy. They want you to know they are with you too. You were most recently honoured with a champagne toast last Sunday afternoon… Can’t wait to hit the veurve when you’re let loose again!

    ox

    S

  4. Steve – even *your* friends are welcome to comment here. You know how much I like this correspondence and the well wishes definitely help. I’m trying to figure out *when* we can hit the veuve too – hopefully in a few weeks.

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