I hate waiting for what's to come next

So...my husband finished his 30 radiation treatments/42 days of chemo on Monday of this week. Don't get me wrong, we are super excited and over joyed that this phase of treatment is over with. But it's just that, a phase, and while this one was supriseing easy all things considered, what about what comes next? And perhaps most scary, what if it didn't work? We have our 1st post treatment MRI scheduled for 4/17/12 back at Duke University where he had his surgery, but I feel like the next 2 weeks are going to either drag by or go by too fast...I don't want to see the results unless it's only good news. And then, we either have to start a year of chemo & hope that it works where it hasn't before. Or if we get the results we want on this MRI, we have to start chemo and hope it doesn't knock him on his ass for the next 12 months.

I thought that being done with this initial phase we'd be all "hell yeah, suck it cancer" But I think I'm more scared & apprehensive now that we're just sitting ducks than I was when we were actively fighting cancer- taking chemo pills every day & going in the microwave (what he affectionately calls the radiation machine.)

Does anyone else feel like this??

Comments

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  • treatment is a long process for a lot of people. I was in a perpetual state of waiting for 9 months in my treatment. longer than some, less than some.

    then after some recovery time, I began a new phase of treatment for 3 months.

    I fell into a rhythm. I'd get treatment and then I would have FREQUENT blood tests because my treatment's primary purpose was to nuke my bone marrow and we needed to know when I'd need transfusions. so, watching my blood test results was my job. I'd try to predict the date I'd hit my nadir, and when I'd need transfusions, and when my counts would begin to recover on my own, and when they'd get high enough for me to receive another round of chemo.

    I only would have been more nerdy about it if I had actually graphed out my blood counts after each test. and I would have, except my local hospital didn't provide me with printouts like MD Anderson did.

    I also kept track of my vitals. weight, bp, heart rate, and would try to do better. one thing I saw that was with my mother-in-law cooking for me, I ballooned to 190lbs (my heaviest) and at about that time, we started cooking our own food and I started getting fresh vegetables again (all she ever cooked was meat and potatoes and nasty cooked canned vegetables - it's no wonder I got fat eating that junk). I am now actually almost vegetarian. I eat meat maybe 2-3 days per week. I got a bike computer with a heart rate monitor and set up a stationary bike to ride and tracked my HR, making sure it did not go higher than my oncologist wanted (even though that level was pretty ridiculously low considering my pre-cancer max HR approaching 200bpm). I gave him printouts showing that my HR never went higher than 150 in my exercise.

    All of that gave me something to do, it gave me control in the situation, and being able to predict things and expect them took some stress out of the situation, even for my wife. In some cases, I could FEEL that I needed a transfusion between blood tests. I got to know my body well. that was all very helpful in my treatment.
  • akay83akay83 Community Member
    Absolutely.

    Treatment reminds me of traveling: it's a lot of playing hurry-up-and-wait. You rush to appointments and then wait for them to start and then wait through long treatments. But even during those times that you're sitting idle, your life is so busy that your mind is occupied with keeping up with your day-to-day doings. There's not really an opportunity to reflect on what's going on.

    But once you reach a point of prolonged waiting -- waiting days or weeks instead of just hours -- suddenly there's not much to distract from the worry and anxiety.

    I (and my family) try to keep busy during those times. It seems counterintuitive since you're finally free of your appointment schedules and it feels like it should be time to relax, but letting yourselves sit still is just what gives your mind time to wander.

    My favorite way to pass the time has been to take on household projects. When I was recovering from my stem cell transplant, I cleaned out my bedroom (it took at least 5 trips to Goodwill), repainted it, and framed new artwork. Your husband's activity level will of course depend on how he's feeling, but the great thing about home projects is that you can work on them for as long as you feel up to it and then rest. It took me at least a few weeks to just spray-paint an old frame because I did every step individually.
  • That is the perfect way to describe it!! He finished treatment Monday and by yesterday was like "um, ok, what can I do now?!?" He has always been very technical and hands on and always, always, always on the go so it makes sense that sitting around "resting" is the worst thing he could do. He has been talking about tackleing some projects around the house and i think now is as good a time as any...when all this is finally said and done my house is going to look brand new LOL

    Thanks for the great suggestion and for just understanding...people that don't have cancer or another serious illness just don't get these things! They either don't understand why he isn't 100% back to normal right now or think he should stay in bed sleeping all day- either of which are true