An Encouraging Letdown

I’m too emotionally chaotic right now to formulate a cohesive narrative or creative representation of what went down this morning with my oncologist, so I’m going leave my apology there and simply try to narrate the situation as best I remember it.

————–

I sat in the waiting room with my dad, the painfully quiet waiting room, where the couple of other patients whispered as softly as they possibly could, though the others could hear them as if they were talking at full volume. My dad sat next to me, legs crossed, scribbling away at his Sudoku puzzles like he always does (I think he’s probably at professional status with those things by now), and I sat adjacent, my head buried in my latest book on cancer (The Truth In Small Doses..please read it), trying desperately to keep my nerves at bay. My feet tapped the floor. My finger twitched on the back of my book uncontrollably. My heart didn’t just beat…it pounded, in the way it does when my nervousness reaches its peak just moments before any race I’ve ever run. I took a couple deep breaths and focused as hard as I could at the words on the page, trying to lose myself in the story instead of the news that waited me on the other side of the office door.

I flipped page after page and almost as soon as I finished the last sentence in the chapter, the door opened and I was called into a back room. I assured my dad I would call him in soon and headed back. I went in alone this time. I wanted to face the verdict by myself…without any distractions or considerations other than the words coming out of the doctor’s mouth and my own uninfluenced reaction. And I didn’t know what that would be exactly. I wasn’t sure if I would calmly nod my head in acceptance, crumble like a collapsing building that just had it’s support beams exploded beneath it, yell out in triumph…or…something else entirely. I don’t know…this is unlike anything I’ve had to experience, so I resorted to my safest strategy, minimizing. I minimize everything. Take away all influence except what is absolutely necessary and let honest prevail.

I sat in one of two chairs resting next to each other across from a shortened exam table as the receptionist informed me that my doctors Resident would see me first and then he would come in. As much as I DIDN’T want to hear that, I knew this would happen. This has been the routine since day one and I’ve come to expect it, to wait for the resident to come “practice” on me. I mean, this is how knowledge and experience accumulates, expands, grows comfortable with itself, but it feels weird to have my mortality as a practice scenario for another doctor in training. I’m about to face down the biggest news of my life and this guy gets to use me as another relatively careless notch in his belt on the way to becoming an “official” doctor. And all that is one thing, but to have him talk to me about my scenario even though he had NO IDEA what was going on is another.

He talked to me about my treatments up to that point. He talked to me about my activity levels as he frantically typed away on the computer, his head somewhere else, evidenced by repeating my answers back to me COMPLETELY WRONG. No sir, I’m not training for a triathlon. I’m just running and riding my bike. Then he asked me about my “score”. I had no idea what he was talking about.

“What’s my score? Like…the stage of my cancer?”
“Yes.”
“Oh…I think it was stage 4. At least that’s what I saw on my forms later on.”
“Yes…you’re score was a 39…which is high….out of 40. But these types of cancers are often found in their later stages.”

I knew this. I didn’t care about this. This was water under the bridge. I wanted to know if the tumors were SHRINKING OR NOT. That was the whole point of the follow up appointment.

He then asked me about my CT Scan.

“Have you seen the results? Have you seen this report?”
“Well…no. It was my understanding that this is what the appointment was about today. To find out what my CT Scan showed.”

He then handed me a report from my file, that talked a lot about “significant tumors around the liver”, “Scalloping” and other terms I had heard in the past. That’s when I started to understand the disconnect in our communication. He was looking at the scan from right after my surgery. This was NOT the scan I just had two weeks ago and from what I could gather, he didn’t even register that after I just told him as such. He was obviously consumed by the formalities of this practice session as he continued to type away on his computer. Soon enough, thankfully, he ended our session and headed out to get my REAL doctor. The one who ordered my Scan in the first place. The one who would actually have my scan, that wasn’t in my file, that knew what was going on and would finally tell me the news, good or bad, that I came for.

But first, to avoid any further confusion, I brought my dad in from the waiting room. How I handled the news didn’t matter anymore…I just wanted to be sure any confusion that might come up was addressed with an extra set of ears. I mean, if anything was wishy washy about this, I needed the help in wading through it, because this wasn’t about how to get meds from the pharmacy…this was about my damn mortality. I didn’t want to second guess anything I heard.

Not long after the resident left, my oncologist walked into the room with a bright demeanor, a pleasant smile on his face and his trademark bowtie resting just beneath his neck. A brief wave of relief washed over me, if only by his presence and not even considering his physical mannerisms I subconsciously registered. I hoped for good news, but knew this could be a protective measure, covering the blow, killing with kindness.

And then…well…a conversation started that didn’t hold much of a cohesive storyline and I only retained bits and pieces of what was thrown at me. He asked about my activity level. He asked about pain and problems with eating. He suggested ways to minimize the discomfort in eating (things I’ve already been doing – small portions, less fiber, smoothie/blended meals) and then he asked to see my scar. Pleased with how it healed he had me lay down on the examination table to conduct a light physical assessment of my abdomen. He pressed in a couple areas, laid his cupped hand on my stomach and tapped hard with his other hand making a muffled thump.

Then he expressed something close to astonishment, at the healing and minimized distention in my stomach.

But he had not talked about the scan yet. The only thing I cared about.

Then he said a lot more, in little bursts, that so much could be read into. He repeated his astonishment over and over, which offered me great encouragement….but then said other things that left me reeling.

“I’m incredibly surprised at the progression you’ve made. I sense almost no distention and I can tell already that the chemo is working. This is NOT what I expected to find. To be honest, I expected your stomach to be in much worse shape than it is…which tells me your responding to the chemo.”

But then…

“These tumors don’t often respond to chemo at all.”

and

“Now, this minimizing may still be residual from the intraperitoneil (heated chemo) chemo we did during the surgery, but we’ll have to wait and see.”

and then

“Honestly, this is really great. I’m so surprised by how your stomach feels and this tells me something is working.”

but

“These cancers don’t really respond to chemo and I didn’t think it was going to be worth it to go back in (conduct the second surgery)” – which to me I interpreted as – “I was pretty sure this wasn’t going to work and that second surgery we said you would get to was just wishful thinking and you were going to die before that”

But..but…but…..WHAT ABOUT THE SCAN I was thinking to myself. And then he came out with it..

“I haven’t seen your scan yet.”

Internally my mouth dropped and I screamed out, “WHAT?! This is why I came here today! You’ve had the results for two weeks now…and you HAVEN’T LOOKED AT THE SCAN?!” All that encouraging news, all that surprise at the healing and progression and POTENTIAL minimization of tumors and astonishment at the chemo ACTUALLY WORKING (are we taking huge shots in the dark here?)…those all meant nothing to me. I WANT THE EVIDENCE. I want you to look at the scan and tell me what’s REALLY happening. The 10 to 20 second feeling around my stomach, no matter how skilled you are, is not sufficient enough of an exam to allay my fears right now.

He kept his pleasant demeanor, but I could tell he was fumbling to justify not looking at the scan before I came in, alluding to being so busy and “things coming up” that he just couldn’t get to it. And that’s when my dad chimed in….with a reservation in tone that I knew took quite an effort to conjure,

“So, do you know when you can tell us when you’ve looked at it”

And with that he promised he would look at it TODAY. And assured me that after taking a look at it he would give me a call to discuss what he found, but he may not get to calling me back today, but he’ll try this week, and then, after crossing his fingers in front of his face, quickly backpedaled and said, “If nothing comes up and gets in the way.”

With that…I don’t even know what was said further, if anything. He thanked us, left the office, and left my dad and I sort of frozen in our own sense of astonishment. I mean, did that just happen? I spent the last two weeks both dreading and anticipating this meeting to get SOME sort of clarification on my life from this point on, but instead of any sort of relief or resolve, I’m left to continue hanging in the balance because he never looked at the CT Scan? REALLY? Now, don’t get me wrong, I’m not saying this was a deliberate act of carelessness, or to imply that my circumstance outweighs anyone else’s, or that my doctor isn’t a very busy individual, but hell, if you’re not prepared for a meeting with the basic piece of information the meeting is predicated upon….at least reschedule. I stepped into his office with an incredible sense of concern and walked out no less comforted, and no more knowledgeable. I’m more confused than ever…and this is not what I want.

I mean, to be given a sort of encouragement by his astonishment at my progression is one thing, but then there was his, maybe inadvertent, admission that he didn’t think the chemo was going to work in the first place, and that the surgery I’ve been looking towards (with equal dread) as an endpoint was also being looked at as futile, and that maybe the chemo ISN’T working and this is just residual from the chemo given during surgery…and…and….well shit. I don’t even know what to think or feel right now.

I JUST WANT TO KNOW WHAT THE SCAN SHOWS.

And before I get too wrapped up in my chaotic swirl of emotions, more than I already am, I’m just going to leave it here. I’m going to mark this meeting as an unexpected, frustrating hurdle in this race and wait for that phone call. I only hope my disappointment wasn’t masked completely this morning and he is compelled to make it a priority to call me this week and alleviate my concerns and considerations. It goes without saying I’ll update this blog when I find out just what the scan reads. Until then, I’m going to continue on unabated…and go for a good, sweaty bike ride.

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13 responses to “An Encouraging Letdown

    • It’s ok man….the results aren’t going to change, no matter when I get them, I just WANT TO GET THEM. 🙂

  1. that.sucks. i. feel. it. i. understand. completely. more than ya can know;) sucks total shit. no words. except SUCKS SHIT and FUCK THEM and FUCKING FUCK THEM. will suck down a few sobs for you and now gonna bang it out on my bike. love xos

  2. and hey…it’s not the 29th, yet.

    your time
    non-linear

    yet.
    xos

  3. If you haven’t already, get a copy of your CT scan on a CD. You won’t be able to make sense of it, but you might be able to find someone (a friend-of-a-friend kind of thing) who does. In my case, my wife has a high school friend whose mother works as a nurse in a hospital. We sent her a copy of our CD, she knocked on the hospital oncologists’ door, and got us our second opinion in a matter of minutes.

    • Yeah, we’re going to get a copy (got one last time) as my brother in law is a doctor as well and knows a bit about reading CT Scans…or can at least send it to a colleague. Thanks!

  4. It’s hard to believe that the doctor did not read your scan before your appointment. What a letdown. Anyway, the last sentence of this post was awesome. Your drive to move forward “unabated” is inspirational. Hope your ride was sweaty!

    • Thanks Pete….I mean, despite everything else, I still have control over what makes me feel complete, so I should take advantage of it!

  5. I hope I’m not overstepping bounds here, but the goings on of the entire visit were just wrong. Start to finish. The resident should have been more attentive, and at the very least he should have been much more closely supervised. The attending, busy or not, completely dropped the ball. You have every right to demand your results, and if you are so inspired, you can march right into that office tomorrow and sit there until you receive them. Alternatively, you present to the radiology department where you had the scan, and ask for the CD with scan (as suggested above) PLUS the report. Then you march to the office and ask the attending to interpret the results for you. You were there for a service you did not receive, and what’s worse, they offered very little in the way of an apology for having not delivered!

    No waiting for phone calls that may or may not be obstructed by other pressing business! There is no excuse for any of this. My blood is boiling.

    You were treated in a very unprofessional manner, and there is just no excuse for it.

    • You’re not over stepping bounds at all…the opinions of those in the field mean the most to me and give me a greater confidence in my decisions. With that said and the extensive responses you’ve given…I very much want to meet up to talk about things, cancerous and non. I’m around the Broad Ripple area all the time. Email me (or have you already?) and let me know what day works best for you and I’ll come meet you. Thanks so much!
      urbanwings@hotmail.com

  6. From my experiences, I think that doctors sometimes don’t like to deal with unpleasant situations, and if they feel the outcome will be as negative as expected, then they don’t bother to look at evidence before they see the patient because it doesn’t tell them anything more than what they feel they already know will happen and it can give the patient false hope. It sounds from your report, Scott, that he didn’t expect you to be in very good shape at all and so didn’t bother to look at the scan. Instead, you are in very good shape, especially considering the surgery. What that could mean is hard to say, I guess. Honestly, everything from the testimonies that I read online of patients after this surgery with this disease would have never led me to believe that you could ride from Indy to Bloomington and back in a few months after or that you would be running 6:50 miles ever again. With this rare of a disease, you may be nearly a sample of one, statistically, and given what you are doing, you may be a sample of one literally. I’m sure that any doctor would not expect someone that went through what you went through, much less with this disease, to be doing what you are doing, and especially at your age. Perhaps he didn’t know what to say.

  7. Perhaps also, as A says above (and using his/her words, adding that I hope that I’m not overstepping my bounds here), have the cat scan read by some other hospital that is not affiliated with this doctor. Call a major cancer center (Sloan Kettering, Anderson in Houston, Mayo) and ask if someone there could read it, as well. If things are not going as expected, then perhaps it is wise to have another set of eyes/brains on this for reason’s sake.

    • Yeah, I don’t really know what the doctor thinks about my situation after this meeting…whether I am a sample of few/one/etc., which is another reason I hope to hear back from him as soon as possible. Maybe he’s taking more time to really evaluate the situation now? And yes, we’re already looking at having more eyes on the scan once we get our copy. Thanks!

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