Today’s to do-list: Bank and groceries. Check. Pick up prescription cat food at vet. Check. Drive over an hour both ways for blood work and MRI; wasting over five hours. Check, check and check.
Sometimes the most frustrating thing about battling cancer isn’t the radiation or needles, but all the wasted time. In Boston, I had a chance to sneak a peak at ongoing results of a comprehensive patient survey. The verdict? The average myeloma patient spends between 40 and 50 hours a month driving to and from appointments, sitting in waiting rooms, on the phone making appointments and talking to insurance companies. That’s between 10 and 15 hours a week!
Unlike many other cancer patients, this isn’t a three or six month thing and then you can get on with your life. Except for a fortunate few that respond well enough to therapy to take extended drug holidays, our treatment is ongoing.
The survey didn’t even address lost income, or the cost of travel, meals and overnight stays. And what about caregivers? Time spent away from work and families; their lives!
I know, I know; living with cancer isn’t supposed to be easy. It’s hard! I get it. One does what he or she needs to do to stay alive. But that doesn’t mean we have to be happy about it!
I’m not a fan of MRIs. Stuck in that noisy tube, unable to move for 30 minutes or longer. Sometimes the order includes contrast and they need to start an IV. Trust me– by definition, radiation techs aren’t the best “stickers.” Complicating the issue, MRIs using contrast is contraindicated for multiple myeloma patients; it’s hard on our already overtaxed and/or damaged kidneys.
So I try and pick my spots. In this case–searching for a newly formed lesion on my iliac crest–I’m leaning toward allowing it. But I don’t every time. I’ll leave for Tampa about 1:30 for my 3 PM appointment. Fighting rush hour traffic, I should make it home by 6:30.
And the results? I may or may not receive a call or email. Most likely I will have to wait until I see Dr. Alsina next Thursday morning–another 2-3 hours wasted driving round trip.
Yes I’m whining. Sure I’m venting. But haven’t you felt the same frustration I do?
Of course, it’s always all easier to take when we get good news. Bad news? At least I’m dazed and numb for most of the drive home, making the trip seem to fly by. Cancer is so damn inconvenient!
Feel good and keep smiling! Pat