I drove my son and I to the appointment with my oncologist this morning, navigating roads through a windshield smeared with a rain so cold it verged on freezing into snow. The wind shook the car, turned pedestrian umbrellas into catchers rather than deflectors, and seemingly tried to prevent us from actually entering the hospital once we parked and walked, leaning forward just to stay upright, into the entrance doors. I would like to say that was the most difficult part of our day, but the warmth of the waiting room interior was a deceptive comfort to the information I would soon be given.
August and I sat relatively silent in the exam room, when the crack of the door internally jolted me, and my smiling oncologist walked in. My startling conveyed more about the suppressed tension I held in my body than I was acknowledging. We shook hands, moved through our typical friendly small talk, and then quickly got down to business.
I relayed the pains I was feeling again and said, somewhat cautiously,
“No disrespect to your practice, but when I looked online, I’m pretty confident I have an enlarged spleen by the symptoms I’m feeling.”
He countered immediately,
“Well you definitely DON’T have an enlarged spleen…”
and then went on to explain the results of the MRI more in depth, then the secondary tests we did for amylase and some other measurement that escapes me right now. Everything looked great. He reiterated that tumor growth was still relatively stable, and any growth they could detect was negligible.
But there was that significant, seemingly increasing, pain that prevents me from eating fully, comfortably, or even move throughout the day with ease. Something, I knew, was more than just difficult. Something was wrong.
In hindsight, I got the sense he knew what was going on prior to our discussion, but wanted more confirmation before he gave a specific diagnosis, rightfully, scientifically, so. He pulled out a diagram of a stomach, liver, gallbladder, and then drew in the spleen, areas of tumor growth difficulty, some arteries, and began explaining.
To be honest, I won’t try to recreate the exact processes going on in my body, but his speculation is that I had formed a number of gallstones in my gall bladder, that were causing significant discomfort and potential blockages around my stomach. He then considered the potential of the gallstones working in concert with tumor pressure near the spleen, around the stomach, and finally discussed the systemic workings of the pancreas and a potential problem there related to blood flow, compressed arteries and some how that relating to the gallstones. Honestly…I don’t know…the inner workings of the body are complex.
August messed around with Minecraft on his iPad and listened in from time to time while the oncologist started talking treatment specifics.
He wanted to give me an ultrasound to look into the idea of gallstones as the primary consideration for my pain, which he referenced on the diagram he showed me, drawing all sorts of relationships through lines and circles and notes. In the end, it looked like he had drawn out a play for the last push to win the Super Bowl.
“Ok, we’ll send the spleen around right, drop back into the gallstones, sever off the pancreas line, then throw a hail mary into the liver, and…touchdown!”
Well, not really, but you know what I’m saying.
What he really said was, “I need to make a compromise with you.”
See, my oncologist is leaving the country for a conference and vacation with his family. This is part of the reason they pushed back my surgery another couple of months, which although sounds kinda crazy and insensitive, the plus side is that they were able to push my surgery back precisely because I was doing so well…until I wasn’t. But up until now, I had no cause for immediate concern, with no tumor growth, no life-threatening difficulties, no nothing really.
I told him I understood his need to go on vacation.
“Look, I completely understand you actually have a life outside of your work and you need to do what you need for your family. I hold no frustration against you for that. And if all I had to do was deal with the pain until the surgery, I would, but my concern is that my difficulty in eating is going to lead to decreased weight and strength, which I know isn’t good for the surgery or recovery.”
He agreed, completely. He said I was right to have these concerns and this is the reason he wants to compromise for me.
He said he is going to push my surgery date forward, and he will do the surgery, but he won’t be there for my recovery. One of the other doctors that works with him and performs the same extensive HIPEC surgery is going to assist the operation, but he won’t be there for the recovery. I saw no reason for concern, but he assured me that he trusts the other doctors.
The bigger problem he said, is the surgery itself. HIPEC is so extensive and can involve so many complications that many doctors aren’t doing it anymore. There is even difficulty in convincing new doctors to enter into the procedure, which I’m aware of as the number of oncologists that will actually perform the operation are problematically small. I’m beyond fortunate that my oncologist is here, in my state, in my city. The only other reputable oncologists for the HIPEC operation of which I’m aware are in Pittsburgh and the UK. He even let on that he isn’t taking anymore patients for this surgery, because of it’s intensive, difficult nature.
So yeah, there is cause for concern in relation to the recovery. He conveyed a story about a patient who had the HIPEC operation, successfully, and the oncologist had to leave, but then an infection or similar problem arose and the patient died..or well, as he put it, “It didn’t end well”…while he was away, which he feels terrible about.
So that’s the compromise…the surgery will be performed by my oncologist, but I’ll be in the hands of his trusted colleagues for the recovery. Considering what I was about to find out…it’s not really a compromise at all. I’ll take it.
We left into the exam room and walked to another small room for the ultrasound. Spoiler alert, I’m not pregnant! August watched the computer monitor as he rubbed the cold jelly around my abdomen, looking into various organs, measuring tumors, and trying to get a definitive sense of what was going on. He was absolutely great with August, having him come to the screen and explaining the entire process, answering all of his 9 year old questions and making jokes all the same. And August had me beaming the proud dad with his insightful questions and understanding. At one point the doctor said in surprise,
“Wow. You understand this better than my residents!”
Very quickly in the procedure his concerns were confirmed. The gallstones were readily visible in the ultrasound, of which couldn’t be detected in the MRI, and this led to a number of other concerns, the worst being pancreatitis. Again, I’m not going to labor into the details of the relation between the two, but I could tell the concern was real and relatively immediate.
Then it was Auggie’s turn for an ultra sound…no, really. He had August get up on the table, rolled the device around his stomach, and took a handful of screenshots to print out and give as one of the most unique souvenirs I can imagine. I was so grateful he engaged with August in this way, relieving any unexpressed fears he might be harboring about the whole situation, or at least distracting him from tedious adult medical practice boredom.
We began talking about what he saw, namely the problem of pancreatitis, which I could tell escalated the response to my pains. I still don’t know how the process plays out, but my pains are increasing warning signs towards pancreatitis, which is life threatening. From what I could gather, there is no option to wait two months for surgery, which is why we’ve scheduled the surgery for January 12th, two weeks from today.
It’s hard to say I’m relieved about that, but in a way, it’s good to know we’ll get this inevitable process on and I can move to the next period of life where I might be getting away from this yet again….might.
I don’t know, I’ve long stopped expecting a plan. I mean, you’re moving along with cancer like everything is just a mental exercise towards the physical surgery, and then BAM, you’re being told you’re actually residing in a place of high risk for a life threatening sickness that can pounce quite quickly. Who knew? Obviously, I didn’t.
I pryed him with a few more questions about pancreatitis specifically. Can it come on suddenly? I mean, does it just take me out right away? What can I do to not aggravate the situation? And so on.
He didn’t belabor the point, but I could tell through his expression and seriousness that it can be bad, like real bad, like real quick. I mean, from my web research, I don’t think you just drop dead walking to the mailbox, but it’s nothing you wanna stick around and wait out either.
Which is why I found it somewhat amusing that the scheduler asked me, “Is January 12th ok?” As if I had a choice. I looked pensively and said, “Let me think. January 12th? Well..I mean…it’s not like I have a choice I think. Of course, I’m just thinking about who I might need to tell. But yeah, January 12th. That’s fine.”
August and I took our ultrasound photos, gathered our coats, and walked out of the office, into the hallway, and back into the biting, cold rain and wind. And I walked back into an entirely new consideration for my time ahead, of which I can’t even really imagine anymore…again.
Oh…and I forgot. Chemo. Shit. Did I forget or am trying not to remember?
The best case scenario for surgery will most likely require post-operative chemotherapy, as in systemic chemo, as in back to that horrendous life I had to live for a year after my first surgery, with the side effects that completely ruined me.
The best case scenario involves the doctor removing my gall bladder (a guarantee this time), a possible spleenectomy (and temporary colostomy bag…hopefully temporary), and complete removal of all remaining tumors. Considering the tumors are tucked behind my spleen, behind my stomach, and in other difficult to reach areas, complete removal isn’t a definitive, it’s just a hope. But if they are removed, that pretty much ensures systemic chemotherapy for a while, which will help eradicate the “stragglers”, or the little cancer cells that can’t be detected, but will inevitably grow back into tumorous masses. My tumors are enough and tough enough right now that systemic cancer can’t do anything to them, while the surgery can, but if we get rid of all them, then systemic chemo steps in to finish the job. That is, somehow, the best case scenario.
And right now I don’t have the energy to consider what that means for my life after surgery. I’m not even imagining now. With two weeks to surgery, I don’t even really have the time. I need to be with August this week, then double up on work focus and get my loose ends tied before going back into the hospital.
And that’s that. This feels familiar, and that feels disconcerting.
And THAT’S cancer. This crazy shifting of comfort levels, of moving through your days as if nothing is happening inside you, even if only because you can’t feel it, until, well, you can feel it. It’s 180’s when everything was moving dead ahead. It’s having no floor beneath you when you thought you were on solid ground.
And then it’s adapting. It’s coming to terms with no degree of routine or expectation, and only THAT being your expectation. With that realization comes a certain readiness, a cat in pounce mode, an always being on your toes sort of defensive posture, where you steel yourself against what seems to be an inevitable attack on your body, your psyche, your emotional stability, and ultimately your life. So you prepare for anything to happen, and when it eventually does, you adapt. You readjust and keep moving forward, as much as is in your control, to keep your emotional life together. To keep your financial life together. And then to keep your physical life together. Those seem to be the only simplistic battles worth fighting anymore. We tend to whittle away the excess, the petty problems, the extraneous considerations, the abstract absurdities of shopping malls, celebrity culture, diet fads, and Facebook arguments, until we are left with the ultimate battle of reward versus risk.
Well, that’s how I tend to navigate the world anyways, in part because I want to, and in part because cancer has compelled me to.
So I’m back here again. Not just entering surgery to manage the cancer, but entering it abruptly to avoid some manner of dying. And yet, here’s the good news, I can still run for the next two weeks. And August is here for one more week, so if you’ll excuse me, I have some more non-cancerous living to get back to. And then, chance and surgical skill willing, I have more life to get back to living…come what may.