I have been trying to give my new oncologist and the facility a chance, the benefit of the doubt. I like this organization and don’t want my own angst, and vulnerability about switching oncologist’s midstream, to color the transition. But this morning this was tested.
I arrived at the hospital and headed to their office first. Most times, at least at my previous docs, they draw blood and put in my IV. Frankly, I was anxious and forgot what they’d told me 3 months ago. I felt like I was late for my appointment. And Since I was unsure I thought it best to check in with them first.
I cannot stress enough the importance of a friendly front office staff. At the old place everyone is always present and kind. My two interactions with the new office front have felt like I’m intruding. Can’t I see how busy they are? They’ll get to me soon enough.
Again, I tried to tell myself to give them a break. Their job isn’t easy. Not to mention, over the last two years I’d cultivated a relationship with other front desk. Add to that my feelings of insecurity with this transition and in the space between scan A & B which makes me needier than usual.
They said no blood draw was necessary and pointed me across the sky bridge towards imaging. Again I waited in line for what felt like 10 minutes but was more likely 2, with no acknowledgment I was even standing there. When she finally did, she commented “oh your appointment is at 8:30”. It was 8:15. “Yes” Perplexed, I pondered being asked to come 15 minutes early.
Immediately I missed the gal who checked me in to every scan over the last two years. Who also had kidney cancer and shared my same oncologist. And the technician who knew me so well he knew when the frequency of my scans increased. I wanted to be asked which flavor I wanted to drink and sit in the waiting room with fellow scanners. And I detest the glug!
Now, I’ve done a LOT of intake questionnaires. It comes with the territory of illness. But I’ve never had one where I literally could not answer the question- Yes and NO both being misleading. The most glaring example: Do you have kidney dysfunction particularly as related to diabetes? Ugh……….the wheels in my head halted.
I have kidney disease, one kidney- dysfunction, Yes. But diabetes, No! So I starred at it along with the other two stumpers. Then I just put a question mark. In the moment I couldn’t gather my wits enough to mark yes and cross out the diabetes part. Or simply write explanations in the margin as I’ve done in the past when something needs clarification.
Again I tried to relax. But having just flown home late the night before, I was tired. My anxiety about what they might find already building on the drive to the Denver airport.
In the lobby I waited for the technician to give me my glug options. 8:35, 8:40… He came to meet me and walked me directly into the CT room. No choices, no questionnaire clarification, no locker. Ugh! wait…….
As I’d discussed with my previous oncologist and according to my last scan report they needed to recheck the growth on my thymus as well as the borderline lymph nodes in my abdomen. I thought this is what was happening. My kidney function always had to be tested before contrast was given and I was wearing an under-wire bra. This isn’t right ran through my head. I was ready to call the entire thing off.
I communicated my numerous concerns to the technician. He asked if I wanted him to double check with Dr. X’s office. This was not my doctor, but another oncologist in my doctor’s office. I didn’t correct him hoping he’d at least be calling the right place and just said yes please. Then asked if I could get a gown in the meantime and insisted he check my kidney function before the procedure. I still wanted to head back down the hall out the front door.
The reply from the doc was she only wanted the chest done. Hmm, is it possible I’m remembering wrong? Because honestly it all starts to blend and holding onto to details can be tricky in stressful situations.
I had a decision to make. Since the thymus growth was likely the more pressing issue I’d go ahead with the scan, but wondered if I was making a mistake. One that would prove costly if another CT needed to be ordered. Frankly, I didn’t think I had the energy to deal with the front desk on the other side of the skybridge to push back further.
After the scan finished I asked if I could get a disk copy to take to my primary physician. I keep a notebook of all my scans and reports. I’ve had to order copies for specialists on one too many occasions not to get organized. And frankly, I wanted to be able to take this and my previous scan to the new oncologist I was feeling tempted to start looking for.
As I sat waiting in the lobby I noticed I’d a voicemail. My doc’s office called. I phoned back the front desk to be informed they needed to reschedule my Thursday follow-up. Apparently they had an office meeting scheduled. They didn’t know this when they made my appointment? “Would 9:30 instead of 8am work?” -cutting into my work day.
Ugh no, not really. “Is there another early appointment this week?” I inquired. Honestly I was flummoxed. My schedule is nuts right now. I began rooting around in my purse for my calendar.
“This is just for follow-up on your chest CT right?” “yes….”the word just screaming in my head. (Again in fairness, he might have been thinking for the CT I just had. But it did not come out that way. Or perhaps in my frustration I didn’t hear him right.)
He managed to squeeze me in at 8:30 on Wednesday morning. Silver lining, results a day earlier. I headed to my car where I proceeding to cry and called my friend BFH, another cancer survivor. We talked about bad scans and good, about being your own advocate and possibilities.
As we talked I began calming down. Rationalizing that perhaps they felt it best to keep the procedure short. Check the biggest issue. Since, it could color the course of what, if anything is to come. In the moment, it all seemed very logical. I would just have preferred that change be communicated to me. And again doubt would creep, perhaps they did but… Perhaps I simply remembered it wrong or disagreed. Honestly, it was just a giant reflection of my fears, easily done in the space of unsure.
I decided to head home and grab my medical notebook. I wanted to read over my last scan report, double check my reality of the follow-up recommendations. Once in hand, I headed back to the office.
Of course when I arrived………the report wasn’t in there. Now I’d have to wait till I got off at 5. I was completely emotionally exhausted.
Nothing felt familiar. The little things that stabilize this process all seemed gone. And I suddenly found myself feeling increasingly unsure these medical professionals had my back or frankly understood my case. Which just makes the not knowing that much worse. Any sense of trust seemingly lost, which is so damn crucial when you are vulnerable.