Today was the second follow up appointment with my surgical oncologist, almost one year since diagnosis (April 4th). My dad came with me as has been the routine from day one. Prior to the meeting I expressed my expectations to him, how I assumed my doctor would have looked at the recent scans and will simply tell us that surgery is not an option. Very matter of factly. Straight forward. Then send me on my way to continue my ceaseless routine of chemotherapy infusions and pills, just waiting for the cancering process to either give up or find a loophole to exploit itself out of control. I was emotionally prepared for this.
As is protocol, we sat in the exam room with the doctor’s “Fellow” who briefed us on the matter at hand, getting his practice in before the doctor took over. I’ve learned not to put much emotional stake in what the Fellows tell me, as their knowledge of my predicament is both secondary and very limited. They often read my file, it seems, moments before they meet me. This fellow, fortunately, seemed a little more knowledgeable of my situation and did a decent job explaining the potential for follow up surgery and what this might mean for my life, but to be totally honest, i’ve retained very little of what he actually said. I do remember one quick exchange that went like this,
“So, how long is Dr. Gupta giving you chemotherapy?”
“Oh. So forever.”
My entire insides cringed at his inadvertently unsympathetic phrasing. “Forever.” I thought to myself,
“Come on man…let’s use a different term. I mean, I’m going to die SOMEDAY, so I won’t have chemotherapy FOREVER.”
Admittedly, if there was such a thing as hell (don’t worry..there isn’t), a lake of fire would probably be far preferable to an eternity of chemotherapy. The “Good Book” needs a little updating to it’s disincentives.
Anyways….after the Fellow left, I felt a little dejected, staring off into nowhere and waiting for the sense of dread to pass, the realization that if a surgery does take place…it’s probably just one of many, and so I was left with a lot of questions.
A few minutes later my surgical oncologist walked in, a man who I greatly enjoy, despite our brief interactions. He is pleasant, energetic, kind, genuinely positive and hopeful…and still wears bow ties. Of course, cancer doesn’t care about any of that, so I wasn’t sure how HE was going to convey my options, despite my previously stated assumptions.
He walked in, exchanged greetings, and then before he even made it to sit in his chair he said,
“Well, you’re a tough one! I’m VERY PLEASED with what I’ve seen.”
He continued to offer praise regarding my situation, how I’ve responded to the surgery, how I’ve handled the chemotherapy, how my CANCER has responded to the chemotherapy in that it has held steady. It’s a lot of what I’ve heard before. That my cancer isn’t growing, although it’s not shrinking. He also commented on my physical appearance, that I look good and have gained weight, which admittedly, struck a runner’s nerve with me. I concentrated on my weight for so long, always hovering just above race weight, that adding enough mass to be noticeable doesn’t sound like a GOOD thing to me…though I know it IS a good thing in relation to cancer. Then in more vague terms, he reiterated a sentiment he let on to in the past…that he didn’t think I was going to do very well after surgery.
He expected the worst. I don’t know if he expected me dead by now, but he certainly didn’t expect me to be thriving, or to have a hopeful outlook into the coming years. Mind you, this negativity wasn’t a judgement on my abilities as an individual, but rather related to what he saw when he opened me up. He admitted to being “bummed out” when he went in and actually met the cancer mano y mano. He explained it this way…
“Many patients with your type of cancer have a lot of cancer mucin floating around that can be easily removed, where yours was as if someone poured a bucket of concrete into your stomach.”
That is what caused the problems. It wasn’t that I was ravaged by tumors…it was that my cancer was taking hold in my abdominal cavity and not letting go, severely hampering his abilities to take it out without causing severe organ damage, which prompted the chemotherapy regimen, to hopefully reduce the tumors and make a future surgery easier for him. But then again….he didn’t think a second surgery would be worth it. He didn’t expect me to last this long (I guess) or that my situation would have spiraled out of control. I don’t know….but I do know this…he followed up some of this explanation with this statement,
“I’m going to recommend surgery again.” (and I paraphrase) “I think because you are doing so well, because the tumors are not growing, because you only have a little accumulation of fluid, that we can go back in and take out more. I actually think there is a possibility we can go back in and get all of it.”
Yes, he said ALL of it.
“I’m hopeful that we can get more of the cancer out, to chip away at what was left behind, that maybe the chemotherapy will have worked to a point that it won’t be as difficult to take out this time.”
And so on.
To be honest, I may not have shown it, but I was taken aback. Remember, I was sure he was going to plainly state that surgery wasn’t even a consideration and send me on my way…so to be given so much positivity and encouragement, even a very quickened timeline to get wheeled back into the operating room, well, it took some time to process. IS taking time to process.
The encouragement, the hope and positivity, it was infectious and I had to temper my emotions. I had to stay level. He DID say “ALL of it.” But he also said it with reservations.
So let’s scale back a bit here. If I had to gauge my situation as it stands and everything that was told to me during our meeting today, I would say we are still squarely on the side of losing to cancer, that eventually cancer is what will kill me (short of getting creamed by a car while out bike commuting). The positive side to this is that it’s going to take awhile. If I’m able to continue this trajectory of strength and a relatively high quality of life during this process, that these surgeries will do a great deal to extend my lifespan into the foreseeable future.
My oncologist used the phrase, “Many, many, many years” a few times in our discussion. He referenced other patients with more tumors than myself living 10 years out, some possibly even further because he hasn’t heard from them in so long. This is tempered, however, with the patients that come back every year or every two years for additional surgeries because they are experiencing growth and blockages that are threatening their quality of life and existence, period. But, despite the “bucket of cement” scenario he dealt with the first time, he still feels that this surgery will have SOME level of success and that my prognosis is that I will live many, many years out. Maybe supplemented by chemo. Maybe not. I’m not quite sure about that yet.
There is, obviously, great cause for celebration in this, but I’m not letting go completely, because, to be honest, I have never felt like I was dying anyways. When my body revolted at the last second prior to diagnosis, I didn’t even have enough time to consider that I was on the verge of dying to some degree, because I was instantly pulled into the world of surgery and post-surgery recovery. And through all this recovery and chemotherapy, no matter the problems I continue to experience through the medicine’s side effects, I’ve still never felt like I was dying, like I had a foreseeable end to my lifespan. Hell, I’ve just been looking to when the side effects dwindle to the point that I can start running again.
So, although I’ve never felt like I’ve ever been dying (I’m still in “thrive” mode), I’m bolstered by this idea that, even with the complete destruction I’ll experience through this surgery, I’ll have an indefinite timeline to live through. I’m bolstered by the realization that even if we don’t “get it all” this time, we will have reduced the crowding in my stomach yet again and I can expect…if all goes well…an increased quality of life yet again. I’ve got a second wind, so to speak. I’ve got “Many, many, many years”.
Trust me, I plan to continue making the most of them.
For now though, surgery has been scheduled for August 12th. He initially suggested I go in sometime in May after he returns from an overseas conference, but he explained that because my cancer is slow growing that it’s not imperative like it was last time, that we can wait if it’s easier on my life. And it is. I’m going to take this time to 1. process what is about to happen 2. prepare for the downtime financially 3. establish the life Laura and I are about to build here in Indy and, most importantly, 4. get every day of visitation time with my son this summer. Then after sending him back home, I’ll get wheeled back into that operating room and repeat that complete physical destruction yet again….in hopes of an even greater recovery this time and many, many, many more years of passionate living.
Whew…things sure change quickly. Let’s do this.