My heart is kind of breaking right now. I now understand how so many cancer patients feel when the system fails them. We have been incredibly fortunate up until now with our caregivers, time lines and insurance coverage. Suddenly it seems that has all gone to shit!
It’s been weeks since our first visit to Shands and two months since Steven’s last chemotherapy treatment. In the interim, his cancer is gaining strength and because of the most bizarre series of circumstances that include the Christmas holidays, the yearly Lymphoma convention, our doctor’s annual mission to Haiti and pure bad luck, Steven has become a hot mess.
Finally, on Monday night we got a call from Dr. Sprawls. For whatever reason, all the other doctors in his practice who were covering for him during his scheduled absence, chose to ignore Steven’s calls and updated messages concerning his plummet into really bad shape, So that particular call was a ray of light. Dr. Sprawls said he was going to get Steven into the hospital for the first round of RICE chemo, before our trip on February 2 back to the Bone Marrow Transplant specialist in Gainesville. Dr. Sprawls decision was the first time in a long time someone has finally taken the steps to relieve Steven’s symptoms and push back the cancer to a more manageable place. I was SOOOO excited. I finally felt like we were back on track for proactive treatment of Steven’s pain and suffering.
I know that sounds weird, but Steven is way past my care givings abilities. I’m good to a point, but I’m not a trained professional and once he started passing out again, not from chemo side effects, but from the cancer itself, I no longer felt knowledgeable enough to be trying to figure out how to keep him safe, comfortable and without pain. And I’m not in the physical shape to be lifting and toting him from room to room. And the nausea just adds to the daily trips to and from that most excellent comfort height toilet…something that everyone should invest in! So the idea that he would go to a place where there was a whole staff to take care of him, options for elimination that don’t involve maneuvering to the bathroom with blood pressure of 90/50 and the meds that would help fight the current symptoms mixed with the industrial strength pain killers that you can only get through and IV drip, I was thrilled!
But Tuesday came and there was nothing. On Wednesday the hospital told us they had to order the chemo drugs because they don’t stock those. Today is Thursday and I took the day off from work to get him settled. It was early afternoon when we finally learned that the 3 days of continual chemo could not start today because there is no weekend chemo nurse to oversee his treatment. Seriously? There are nurses who specialize in chemotherapy? But they only work during the week? And a hospital won’t call one in for the weekend, even when someone is in dire need? Does that sound like healthcare to you? I work in a business where there are no “real” emergencies! Yet we get crap all the time from medical people because we don’t see clients on the weekend. But NO ONE DIES IN DESIGN CENTERS! Maybe if one of those high faulutin’ morons worked a weekend shift to care for a patient who actually could DIE, they might be able to squeeze in a weekday off to come to my place of business!
So now we wait…and I worry that something will happen on my watch. We’ll go to Gainesville on Monday and then check Steven into the hospital on Tuesday. So another weekend where I watch him suffer without being able to help him feel better.
I’m upset, pissed, scared, angry and thankful that this is the first time we’ve had to navigate a cluster like this one!
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