TAPETUM

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Edging Toward a New Normal

Friday, September 19, 2014

A lot has happened since my last update. Rob did indeed get into the trial, and was assigned to the second experimental cohort, meaning that he's getting the PDL-1 drug by itself. This is exactly where we were hoping he would end up, so that's a definite plus.

So every three weeks we trek down to Nashville (about 3 hours), and spend the day with him getting blood work, checked over, and then infused, with an occasional CT thrown in for good measure. He's tolerating the treatments well enough that he's back to work full-time, with only two real problems - 1: week 2 of the cycle is monster fatigue. He usually ends up napping at his desk at least once (thank goodness for a private office and a lockable door), and basically falls over as soon as he gets home. And 2: Actually catching an illness is a symptomatic nightmare. Whether it's a drug reaction, an overactive immune system, or an Addison's crisis, no one is quite sure yet (and we're not exactly courting a repeat incident so they can find out), but a minor cold virus turned into fever, sweats, throat sores, dehydration with electrolyte imbalance, elevated liver enzymes, muscle spasms - a whole catalog of symptoms, and a 9-hour ER visit.

His immune system isn't depressed though, so he's no more likely to catch an illness than he was before. We're really torn on whether to get him a flu vaccine, for obvious reasons, but the boys and I are all getting them!

All in all, treatment is going well, aside from the tenter-hooks aspect of not knowing yet whether all this effort is doing him any good. The first effect of the immunological drugs is to cause tumor expansion, so the CT scans so far has shown fairly dramatic tumor growth, and it'll be another month or more before we get to find out if this will be followed by shrinkage. Waiting sucks!

In the meanwhile, we're finding our rhythm with life this way. The boys are getting used to sometimes having to take care of themselves for a day, without having Mom there to boot them out of bed or nag them to get their homework done. We did have to call a taxi once to take our younger son to school when he missed his bus, but we managed and he managed, and I doubt he'll miss it again, as he didn't enjoy going out and weeding until he'd earned back the money the taxi cost.

And I'm starting to find my life balance again. If I haven't actually done things yet, I'm at least starting to have the energy to think "I should cook.", "I should go for a walk/run.", "I should go to yoga." I've burned a lot of my reserves of sanity and energy and my brain and body are showing it, so it's time to start trying to rebuild those reserves - I will probably need them again sometime!

I'm planning to start slowly - our new normal is still pretty tenuous - but you may see me coming around a little more often, as I try to inch back toward the healthy, rather than the easy. After all, I can only get away with ignoring my health in favor of my husband's for so long, and I do nobody any good if I break down under pressure.
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Member Comments About This Blog Post
  • _LINDA
    So glad Rob got into the cohort you wanted, but tumor expansion?? Really? That is just plain scary!! I hope they know what they are doing!!
    Yes, you need to start taking care of yourself, now with your hubby back at work, and the children in school, you should be able to find the time. Wishing you all the best!!
    2351 days ago
  • 1CRAZYDOG
    ((((HUGS))))) Prayers. Sounds like you're all dealing with this in the best way possible.
    2352 days ago
  • ABBY_G
    Your blog touched my heart today. All the best to you and your family.
    2352 days ago
  • RAPUNZEL53
    Good Luck! You have been through a lot!
    2352 days ago
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