a swollen hand and happy halloween

On Monday, I saw my oncologist, Dr. Arbaje. Whenever he asks me how things are going, I always seem to have some sort of new, quirky ailment to share with him. On this day, Dawn and I noticed as we sat in the examining room waiting for him that my right hand was noticeably swollen. A new side effect. When we noticed it, I told Dawn, “He’s just going to say it’s a side effect and not to worry about it.” Which is exactly what he did. Sometimes I think I could walk in there with my head half off my body, and the nurses and doctors would nod knowingly and say, “ah, yes, that happens sometimes.”

The affliction is somewhat hard to ascertain from this photo, but if you compare my ring and middle fingers on each hand, you can kind of tell that the right hand is swollen: swollen hand

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I’ve lost count of the needle pokes I’ve had to endure over the last two months, and regret that I never started a running total (as I frequently thought about doing in the beginning) — it just seemed too morbid at the time, and perhaps it would’ve been. On Monday it took three tries to get the IV in, and I’ve learned the signs of missed attempt. Namely, it hurts a lot more when they miss. Then, because of the trouble they had, the nurses elected to leave my IV in overnight, which is simultaneously nerve-wracking and relieving. I’m assuming the reasons for that are self-evident.

Though today they got the IV in in one poke (thanks to “one stick Peg”), they are once again going to leave it in. They call it a Hep-Lock. I’m not sure that my spelling is correct there or not, but that’s the nurse-speak. As in, “Yeah, Mike, and we’ll just Hep-Lock that again today, okay?”

Okay, I say — why not? Hep-Lock away.

Today, “one stick Peg” told Dawn and I about a patient who actually comes in every week day for five weeks straight for treatment. I couldn’t believe it. I thought I had it rough (and compared to many, I do) — but man oh man, five weeks straight. She also said that part of the chemo for this leukemia patient’s treatment are doses of arsenic. That put some things in perspective, but I’m still feeling sorry for myself, I must admit. I’m just so close to the end, that I can’t stand it.

Thanks to everyone who is helping me through it in one way or another. Yesterday, the social worker here at the chemo ward came in to visit with Dawn and I and said something like, “I’m sure this experience has brought the two of you closer,” to which I agreed immediately. It’s done more than that for me — it has completely removed any sense of entitlement, any sense of taking my wife for granted. I thank her every day for being here and supporting me. There are others too, of course. We are both very fortunate to have Dawn’s parents Georgia and Hartmut so close. Georgia, for instance, has been making the trip into Madison every day this week to pick me up from my chemo and take me home. This saves Dawn from having to ride a bike to work each day after dropping me off, holding my hand through the rough spots, and then popping off to take care of a bunch of preschoolers.

But even with all of the help and support we get, I still get pretty lonely during the roughest times of the treatment, since I have no energy to do much of anything except write a small bit, watch tv, read here and there, and listen to music. I have been fantasizing a lot about a trip we hope to take in the spring when all of this cancer nonsense has been left behind in a locked drawer marked “remission.” We hope to make a trip to the great Northwest to visit friends and family, and along the way do some worthwhile sightseeing (The Badlands, Yellowstone, the Grand Tetons, etc). It is such a trip that sounds so sweet to me now…Something to look forward to.

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I asked my nurse today if she liked my Halloween costume. “hmm..what is it?” she asked. “I’m a cancer patient,” I said. She replied “yeah, and I’m nurse.”

Happy Halloween.

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9 Responses to “a swollen hand and happy halloween”

  1. Hello Mike, I’m a friend of a friend of yours — my best friend Phoebe is a friend of Tara’s from Cincinatti; Feebs has been filling me in on your journey and just pointed me to your blog a few days ago.

    A couple things I wanted to share —

    As you’ve discovered, it’s quite alright to feel sad and frustrated and ludicrous and guilty and irritated and impatient and angry and wistful — all at once, in quick succession, or not at all. There aren’t any “textbook” recoveries from cancer, and the last thing anyone who’s ‘been there’ expects is for you to stiff upper lip it.

    A magnificent trip after you’ve reached “Remission: Accomplished” is a brilliantly wonderful idea. 60 days after my Dad’s last chemo treatment (colon cancer, 2003), we hopped a plane and spent a glorious week in Key West, doing all of the “someday” things he’d always talked about. More than anything else about his cancer, that trip changed him — and all of us — into people for whom the beauty of “someday” is always “now.” A special time for you and Dawn to experience the world without expectations or strictures — could be wonderful.

    Mainly, this is just a note from a girl in Upstate New York, saying “however you can, keep going,” and hoping that you’re well.

  2. Thank you so much for your thoughts — and for reading. It really does mean a lot to hear some positive affirmation, even from a complete stranger. Thanks.

  3. Ann Kjerulf Knien Says:

    Hey Mike!
    A trip to the Northwest?! Be sure and let Storm and I know your plans… we are always looking for an excuse to travel home to Seattle. And it would be wonderful to see you and Dawn out that way.
    We are thinking of you both this week. You are almost there! And that nasty cancer’s days are numbered!

  4. Do you want to know that the Hep in Hep lock is short for Heparin? Perhaps not. You know so much more than before, and I hope most of what lingers is the stuff made from the closeness with Dawn, her family, your friends, etc. It’s much more useful info than good old Heparin (used to flush that bad boy out).

    Cancer provides more precious gifts than any of us would like to admit. I’d get them other ways if I could, but I hope the perspective on things, well, it can’t help but stay put, can it?

    You’re both in my thoughts. Oh, and maybe you could get Sophie to knead your hand? Keep your head on in the meantime, I’m pretty sure that’s not a side effect.

    Gobble gobble.

  5. Oh, and in a completely unrelated note, I have the best mothers ever.

  6. Mike, I recently heard from Sandy what was going on for you. She gave me the blog link, and I haven’t read beyond today yet. I will read as much of your previous work so as to be up to the current page in your ongoing story. We are currently in Seattle and will be here until at least January. We will be watching closely for your progress (FYI – this is the first blog that I’ve ever posted to) exciting Huh 🙂

    With Hope

    Andy & Family

  7. Keep going! Keep going!

  8. Mike, great news about your possible trip this way! I would love to see you and meet Dawn for the first time! Dougie works nights and sleeps days during the week, so I could offer you a bedroom with private bath to overnight in on your way through, even for several nights.

    I sometimes wonder at how many needle pricks I’ve had for the 21 years of my health issues, don’t even mention the lancets for glucose testing as well… Hopefully that will soon be a thing of the past for you.

    Watch the hand! Being a possible side effect doesn’t make any of it less important. I hope the staff didn’t minimize it, only acted so nonchalant to ease your mind about it.

    Well, gotta head off to work…

    Love to ya both!

  9. Oh,and I had a thought this weekend. This is probably totally unrelated chit chat……….

    My quirky little metabolic thing can make joints swell up and down. When it flares it causes a carpal tunnel and tennis elbow (really trivial names for how much it can hurt as it’s a freaking nerve) and my right hand can swell. It feels almost like all the blood goes down into it and gets stuck. It swells a bit and is really uncomfortable….it feels worse then it looks!

    I had other people tell me “fish oil” and I tried it. I now take it twice a day and it made a tremendous different in how my joints felt and I haven’t had severe incident since. I felt a huge difference within three days. It’s all the Omega 3’s evidently- —-and I also read about it my hubby’s Men’s Health. No more swelling…….and it also helps with an upbeat state of mind.

    That isn’t advice whatsoever……but it’s helped me! Shannon

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