I feel like I’ve been in a lot of hospitals this year, without being the actual patient myself. In January, we (I) rushed Angelo to the hospital when his eyesight suddenly got wonky and I was afraid it was a stroke. I even convinced him to stay overnight—and he did—which told me that he might have been a teeny bit concerned, too. (Five specialists later, he was declared, “Fine.”)
By April, I figured we’d had our share of medical emergencies, but April was no match for this summer. We headed into June with Christopher taking his pregnant partner on a midnight trip to the hospital when her water broke—three months early. They landed at Yale New Haven Hospital and my new granddaughter was born on June 8th instead of September 1st. Fortunately, they were able to stay at the Ronald McDonald House, which I will be supporting from here on out. It is an incredible facility and allowed the new preemie-parents a place to stay right across the street from the hospital.
That kind of worked out since Annie was getting ready to start a new chemo trial and, if I was going with her, I could visit everyone—they were all right around the corner from each other. As a mom who had children—daughter, daughter-in-law, son, granddaughter--in some form of care at once—NICU, cancer treatment, housing support—I was grateful to the providers who were paying so much attention to them all.
Then, almost as soon as it started, Annie was informed that the trial drug wasn’t working—she couldn’t continue. (This news came the same week that Christopher and family were finally discharged.) Yet another blow in a long, long, line of blows. (I felt like the woman passenger in the movie Airplane when she became hysterical and the Universe is all the passengers who lined up to smack some sense into her.)
But, there was another trial—Yay! Annie got all the preliminary tests and scans done to make her eligible and the day came to begin. But she didn’t—due to the results of the bloodwork they always do on the day of the treatment it was determined that the levels indicated that something was just too high and they sent her directly to the hospital for testing, scans and admittance.
I was teaching a class when Annie called to tell me and I said I’d be right down as soon as Angelo picked me up from school. After working out all the logistics (what to do with her car, what to do with Luca, what to do with Tony’s upcoming work travel, what to do with my eyes constantly brimming with tears . . .) we decided that Angelo and I would drive to New Haven and get her car, since we didn’t know how long she would be there. I already knew I was going to stay over regardless of any logistics. Or visiting hours. I threw my meds, toothbrush, a pair of socks and a change of underwear into a small backpack and figured I would stay until I either knew what was going on or was bringing her home.
When we arrived, we found Annie in a hospital room—with two other women. Previous hospital experiences to date had been pretty good so it was a bit of a surprise to see that Annie had been assigned to a room with others, particularly since she’s immunocompromised. The patients’ beds were separated by curtains and there was one bathroom. One woman was pretty quiet and we barely knew she was there. But the other woman made the next 24 hours punishing. (If you are at all queasy, skip the next few sentences.) That this woman made constant phone calls on her speakerphone was the least of the disturbances. Every trip to the bathroom was accompanied by a hacking and phlegmy cough which rendered her retching mere feet away from us. She was being treated for explosive diarrhea but didn’t want to confine herself to the commode the staff provided for her—she continued to use the one bathroom and left all the used pads and towels she had discarded in there. When Annie quietly mentioned it to one of the nurses, she addressed it with the woman, but then came back to tell Annie loudly, “You can use the bathroom now—we got it all cleaned up.” Subtle.
Since Annie was there for testing, it came whenever they were able to get someone to do it. A 10pm CT scan, 1:30am blood draw, which took several attempts from a tech who assured us she was “great at this” but left her with bruised arms. The tiny consolation in this night of terror was that no one tried to kick me out. (Like they could have.) I shoved myself in between the wall and Annie’s bed and was awake more than asleep, feeling like I needed to stand guard. I kept eyeing the lounge chair in the cubicle across the room that wasn’t being used as I contorted myself onto two chairs we had grabbed from the hallway. Around 3am (awakened once more by Hacking Woman) I was reminded of the time when Annie was 3 months old and hospitalized with meningitis and I slept by her side in a chair next to her bed.
Annie was discharged the next day, with better “numbers” and a good possibility that she could resume the trial. I fell asleep that night at home, feeling like I had never slept in a more comfortable bed. It had been a harrowing experience, one that I probably should keep to myself, but here I am—sharing it. I think the reason why is that we can’t keep treating people like this. If curing cancer is the goal, then the treatment of cancer patients is a key strategy. They cannot be lumped together as if their needs and symptoms are the same. Even Hacking Woman deserved better attention and care.
We are lucky that this was a singular experience out of many more good ones, but I feel like it is indicative of the state of our medical care right now. And not the providers or the professionals, many I know would be appalled at this. It is—as it always is—the insurance monopoly and its grip on our health care.
We all wear pink or purple or white or orange to raise awareness. But whose awareness are we trying to raise? We—the families—don’t need to be any more aware, do we?
Cindy, I have lived this with my son...I know exactly what you mean....and 30 years later I am still on duty and an advocate for Mark because the system can fail...jane
That many readers can attest to your experience is further proof that something in our medical system is broken. Thank you for sharing and shining your light.