Not a fun week

Rough week would be a good summation. The former boyfriend and I both had scans scheduled for Monday morning. After a soggy weekend Monday dawned with some beautiful sunshine and our moods were upbeat even though my liver enzymes were elevated and we knew something was up. After three liver enzyme tests the scan was the next step. But we weren’t quite prepared for the double barrel blast we got from the CT machine. Our appointments with our respective oncologists were back to back. We were in the same examination room. The oncs just rotated through. Mine was first and the look on her face when she came into the room said it all.

She started with the “easy” part, my arm. It’s much better but she wanted a Doppler ultrasound to look for a blood clot. Then she went on to inform us of several spots that have appeared on my liver. She ordered a liver biopsy and bone scan, scheduling an appointment for the first couple weeks of next month to go over the results and whatever witches brew of poisons she’ll propose for me.

Next Johnny’s oncologist came in to say that although two of his spots were the same another was growing. He wants to change out one vicious cytotoxin for one that’s even more wicked. Johnny told him he’d have to think about that and passed on the previously scheduled round of chemo that was on tap for that day. Initially he said he’d come to a decision over the weekend but in the following days it became clear his mind is made up. He’s done with chemo if they can’t come up with something else (and I really don’t think they will). The proposed drug, oxaliplatin, causes progressively worsening neuropathy in the hands, feet, legs, and arms. Plus extreme sensitivity to cold, to the point you can’t even consume a cold drink and have to wrap everything except your eyeballs in cold weather.

So after all that fun news we’re off to the hospital for the ultrasound, which of course finds a blood clot. This creates a prescription for a blood thinner twice a day. But Tuesday morning I get the call to discontinue the blood thinner until after a needle biopsy that had suddenly been scheduled for Thursday. The biopsy essentially leaves you feeling like you’ve been kicked in the side by a mule. If we’d been thinking more clearly we would have questioned why it was being done in the first place. Even the radiologist who performed the test said he didn’t understand the reason ing unless the oncologist wanted a closer look at the chemistry of the spots before proposing a treatment. She is going to be getting questioned about the necessity of putting me through this at our next appointment. We’re both sick and tired of the impersonality of the modern medical system. You’re a number whose importance is dictated by the quality of your insurance. They have a set number of minutes to spend with each patient. And you had better have your questions and concerns ready or they’re off to the next one.

In the meantime we’ve become less forgiving of lapses and oversights. After Thursdays procedure they were supposed to observe me for two hours before releasing me. The liver is very susceptible to bleeding (since it’s filtering all the blood in your body). Everything had gone wonderfully. The team that did the test was nothing short of awesome. But once I got back to the outpatient surgery floor, nobody ever entered the room. After an hour and 15 minutes Johnny went to the nurses station to ask for a glass of water with a straw (since I was supposed to remain on my side for the entire two hours). No water ever appeared. Ten minutes before my time was up Johnny went back and asked to speak with the charge nurse. Jaws hit the floor. Most people don’t understand the terminology and wouldn’t know to ask for a charge nurse. He took her aside and explained the situation (calmly, a major achievement for him). He says her eyes were as big as saucers and she promised she’d be there in a second. She was and proceeded to say that the transport driver who pushed me and my bed back up to the floor seemed to have forgotten to inform anyone that I was back. Johnny said that you can’t blame it all on him, pointing out that my chart was sitting on the front desk and that in two hours no member of her staff bothered to even question why it was there and what was going on. It’ll be interesting to see if we get a satisfaction survey from the hospital. I really believe that if the doctor who performed the procedure had gotten wind of this he would have exploded.

So after getting sucker punched this week we’re catching our breath and continuing with the diet, exercise, and alternative treatments we’ve been doing right along while investigating even other alternatives. We'll be celebrating Johnny's birthday Sunday and observe Memorial Day on Monday. Thanks for your thoughts and prayers and hope you have a wonderful weekend too.