157. That was one of Alan’s most recent PSA levels. He’s doing another blood test tomorrow to get updated numbers.
Depending on the context, that number is meaningless. In this case, that number is bad. Very bad. PSA levels should be 4 or less, so a value of 157 after radiation therapy is not a good sign. His prostate cancer was stage 2 when he began treatment, now it’s moved into stage 3.
After going in for a regular check-up, Alan’s doctor expressed concern that his PSA numbers were still high. He suspected the possibility that an infection might be throwing the numbers off, so he prescribed him an antibiotic—one that I had never heard of, and I don’t actually remember the name. He also gave him a laundry list of supplemental appointments to schedule in order to monitor the progression of the cancer….and let the nightmare begin.
The three new appointments include a CT scan of the pelvis and abdomen, a full-body bone scan, and a meeting with a oncology hematologist. Essentially, they’re checking to see if the cancer has metastasized, and if so, where: up into the abdominal cavity and the organs there, into the bone, and/or into the blood. Note, time is of the essence because he’s still not a surgical candidate because of his previous bout with testicular cancer and we’ve now been trying to manage this for close to 10 months. In that time, rather than seeing the cancer abate, particularly after a full round of radiation, the disease continues to advance.
Keep in mind that I’m still recovering from a stroke four months ago, which requires weekly physical and occupational therapy as well as intermittent doctor’s appointment. As an aside, the blind spot and double vision that I’ve developed in my right eye don’t really seem to be improving. The blind spot—in the upper right quadrant of my eye effecting my peripheral vision—is likely permanent while the double vision may improve. It hasn’t so far.
Holy Appointments!
Before going in for the regular check-up, we had been provided with a referral for the abdominal CT scan. I made the appointment, settling for the ‘first available’ time slot (beginning of September). Once he got to the doctor’s office, the doctor said that was too far out and he had his staff call the office and move the appointment up by two weeks.
He came home from the doctor’s office with two more referrals: the full-body bone scan and oncology hematologist.
Since I usually make his appointments—I still haven’t figured out why I do this, he doesn’t make mine—I started by calling the hospital for the bone scan as noted on the referral. After being shuttled to three different departments, I finally reached what I thought was the correct department (that part isn’t on the referral, and the correct department is nuclear medicine) only to be told that they need the work order to make the appointment….from the urologist. It doesn’t matter that it was the GP that submitted the request, they need the okay from urology.
For the record, we are never provided with a work order, only a referral. That means that I needed to call the urologist’s office. This was Friday morning. By the end of the day, I wanted to bash my head to a bloody pulp.
Mind you, urology has been pointing the finger at the radiation therapist, while radiation has been placing the blame on urology, for the lack of communication in regards to follow up procedures. I should have known that this wasn’t going to be easy or quick. Yeah. I called that one.
After hanging up with the hospital, I called the urologist’s office. Since the GP indicated the urgency of getting these appointments completed, I didn’t want to waste any time. Yeah. After being on hold for 20 minutes just to be transferred to his urologist’s nurse, I knew this was going to be a pain in the ass. Once I finally reached a live person, I told her that I’m trying to make an appointment for a bone scan at the hospital and they require a work order and all I have is the referral. She put me on hold for another 40 minutes! Good freaking gravy! That’s insane. Then, to add insult to injury, I got disconnected. I basically said, screw this, I told her what I needed already, and with luck, she did what was necessary on her end so that I could make the appointment first thing Monday morning. I then moved on to contacting the oncology hematologist.
Nope. Not going to make this easy for me, are you referral gods? That office is closed on Fridays.
smh
Whatever. This whole process took HOURS! Like I said, by the end of the day, I was absolutely done. I was tired of being put on hold, waiting for someone—ANYONE—to actually help me, that I wanted to bury my head under a pillow. I hate talking on the phone as it is, and this just made my blood pressure swing wildly out of control.
And you know what pissed me off? Saturday morning the urologist’s nurse left me a fucking voicemail telling me that if I need anything else, to give her a call. Ummmm … no? Does ‘no’ work for you? She doesn’t answer her phone as it is and the office is closed on Saturdays, but hey, thanks for getting back to me so promptly (after disconnecting me and not calling me back) on a day when I can’t call you back. Woman! You make no sense.
Monday morning, I’m back at it again. Since the urologist’s nurse had left me the message on Saturday, I assumed she had sent over the necessary work order so that I could make the bone scan appointment. Nope. That was wishful thinking. When I called the hospital to make the appointment—and once again got sent to three different departments because no one had told me yet that I needed nuclear medicine (the person that ultimately helped me told me that)—there was no record of the needed work order.
I started to lose my temper. then quickly backpedaled and apologized to the tech. I told her that I was sorry and that I wasn’t yelling at her and it wasn’t her fault, but I was extremely frustrated at the lack of communication and with the process itself. This is stressful enough as it is, adding to the problem with poor customer service and communication just makes it worse. She must have felt bad for me because she said that she would call the urologist’s office to get things moving and would call me back before she left for the day at 4:00.
True to her word, by about 3:30, she called me back and echoed my sentiment about the horrible customer service at the urologist’s office. She was on hold—one doctor’s office to another—for about 40 minutes, but she finally got what she needed. I managed to get an appointment for a week later.
With that done, I called the number on the referral for the oncology hematologist. Wrong office. They gave me a phone number for the ‘correct’ office. I called them only to be told that this is still the wrong office because I need to make the appointment with the specific doctor listed on the form, not the practice.
smh
Fine! I managed to wrangle the right office only to be told that they have NOTHING until October. Seriously?!? However, if I call back to this other number on Tuesday—still the same doctor, but that office is closed on Mondays (of course it is)—I can probably get him something within the week. How the fuck does that work? How is it that the same doctor has different availability depending on which phone number I call? Same office, same doctor, different phone number.
Tuesday morning, I managed to secure an appointment for the next week.
I think I need a drink.
Status Updates
The appointment with the urologist is coming up in about a week and all of the scans have been done. So far, we haven’t seen or heard any of the results. Well, not exactly.
When Alan met with the hematology specialist, she had his most recent blood work (now several weeks old), and both the abdominal CT and bone scans.
It’s bad. Really bad.
The concern isn’t just the extremely elevated PSA. Hematology commented on an enlarged liver, a spot on his kidney, and some sort of ‘bone disease.’ With COVID restrictions in full force—and my persistent asthma issues causing me to spend the majority of my day coughing and struggling to breathe—I haven’t been able to attend his appointments with him. I’ll be there for the urologist’s appointment because last time, once the word cancer was said, he stopped listening. Plus, Iwant to hear what the urologist says. The hematology specialist has already said that he’s going to be starting on a regular drip for the next year along with a biannual injection of … something. Alan doesn’t know (remember?) what either of them is or what they are for.
Of course not. That’s why I usually attend these appointments with him.
Where do we go from here?
Honestly, I’m not sure where we go from here or what comes next. We’ll get more information once the urology appointment is done. But this is now a very real problem and it’s going to take time to get through it.
It’s almost amusing that during open enrollment in October 2019, I actually discussed the option of adding cancer care to my policy. That was literally two weeks prior to his diagnosis. Had I added the rider at that time, they would have ultimately cancelled it due to a positive result within 30 days of implementation.