Coming along

My ANC’s are declining, as are my platelets, but my other numbers are looking good and there are still no leukemia blasts in my blood. I’m still at home and feeling a little stronger every day. I’ve been doing more work for my job and accomplishing more things at home. But lately, I’ve been feeling a certain sort of anxiousness to get back to the hospital and continue with therapy.

Not that I prefer the hospital over being home – but I just so want to kick this thing and sitting at home isn’t accelerating my recovery, though it will probably make me better prepared for it.

The next steps won’t be easy. If I go directly to a transplant – which is a possibility (though not a certainty) – it is a long and complex process that will require almost a year to recover. But right now, going back to the hospital without any sign of complication, infection or illness other than what we know right now, won’t do me any good; what are they going to do that I’m not already doing or having done at home? take my pills? change my dressing? draw my bloods?

So I’m trying to be happy at home and that feels very strange. I am. And yet, I have so much to do to really make this place feel like a home. On balance, I have much I need to do to stay on track with work and balance other responsibilities (such as working on settling my father’s estate) and desires (like cleaning up my own things and figuring out next furnishing decisions to make this a home). Plus there’s the regular bill-paying, cleaning up, food shopping, dish-washing, laundry, etc.. Granted, it’s easier with my mom and other family members around, but that’s also a reminder that I’m not well enough to do it on my own yet and that it’s going to be a long time ’till I get to that point, and can’t I just get back to getting better now?

Surviving cancer is an extraordinary journey. It’s deceiving when you’re feeling like you’re in good health, but are reminded by the smallest things that, really, you’re not. And then there are the big things: a living will, a real will, who are the beneficiaries of my life insurance? my investments? etc.. As a single guy, these things start to take on different meaning and character when you’re suddenly faced with the real prospect of your own mortality. They mattered little to me before and I made rash decisions. And now, I have to think these matters through more carefully. Sometimes, I don’t have the mind for it; often, I lack the heart. I completely broke down the other day reviewing the living will with my mom and realizing the burden I was going to put on her should I ever need her to act on my behalf. And even though that’s not likely, I need to have that in place for the foreseeable future.

The past few days have been an emotional roller coaster. I think that’s normal. And I just read a wonderful piece by Jonathan Alter at Newsweek: My Life With Cancer. I highly recommend it. It seems like my past journey, and gives some glimpse into what the future will be like. (Thanks, Ed, for sharing this with me.) Alter also has another interesting piece that I would recommend: Don’t Judge the Edwards Family.

So my big debate for the foreseeable future is this: when I go back to the hospital, what do I put up on the walls. Last time, photos and drawings were a big help. But I intend to put the photos in albums and try to limit the stuff on the walls. While it was cheery and therapeutic, it started making me feel like I was starting to live in a cramped space. So what do you think? Should I walk in with picture albums, a few select pieces for the walls, a gallon of paint and paintbrush? (You know I will!) 🙂 And that’s what’s making me cheery right now … and will be a good way to end this post, sign off for the evening and go to sleep with a big smile on my face thinking about redecorating the hospital room.


4 Responses

  1. Hi Seth! I am so glad to hear you are feeling better. I think you should decorate the hospital walls with whatever the hell you want! (and as you say, lord knows you WILL!) We are thinking of you from out here in SF! Lots of love….

  2. For decor, I am thinking a large mural, maybe of the Parisian cityscape. I mean, what are they going to do, yell at you? For the amount the hospital gets paid, you should at least be able to decorate! Maybe with a nice chaise lounge in a neutral color!

    Also, positive attitude on everything!! I saw my own physician today and he has two friends in their early 50s who both are are between 10 and 15 years out from their AML diagnosis and doing fine. In other words, while it is prudent for anyyone to have their papers in order (because an asteroid could fall, or whatever), I fully expect that you and I will be able to sit around and kvetch to each other about the poor quality of raisin toast and so on when we get old.

    It was great to see you this weekend! I expect photos of the decor as things progress in the loft.


  3. Ok this is when the party-girl of my youth comes out. My immediate thought was balloons and streamers – tastefully done of course! The streamers could sort of be hung tent like from the top of the room (so as not to cramp it any more that it already would be). Balloons may be going overboard, and may also be verboten, but what do I know?!

  4. Dear Seth,

    How about a great big green triffid like plant? You know, one that you look at and it’s entire way of being says ” You aint seen nuthin’ yet baby!”… Would they allow you a plant in hospital? Well l suppose they allow flowers don’t they… Hmmm. Yep that’s my suggestion. Certainly music, that’ll change the mood of the place when you need it to and do it quickly too. Oh yes, and how about some decent lighting. Hospital lighting seems to be barely distinguishable from rampant x ray residue. Turn off the fluros and take in a decent lamp. That will achieve two things at least.. You will have a familiar beautiful thing with you, and you will be better lit when people come to visit. (And l tell you what, my dear friend, the older l get, the greater my admiration for and pursuit of decent lighting, becomes.



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