Cancer Conundrum. Or, What Not to Say to a Cancer Warrior.

I've been finding myself biting my tongue a lot lately. And eating many of my words, to the point that they've become the bulk of my nourishment these days. After a year of all this shit, I should know better, I really should, but still, words fail me. Miserably. Horribly. Sadly. In spite of witnessing the horrors Bob has survived in the past year, of living them as closely as I can without actually experiencing them myself, I should know better. I do know better, but sometimes, in the heart of the matter, I forget . . . I'm sharing this in the hopes that maybe you all can learn from my mistakes. To think before you speak. To try, somehow, to realize the impact of words, in light of a situation, no matter what it is. . .

So, this latest setback—the clot in Bob's leg—we're told, is not a big deal, nothing to fret about. Happens all the time, we're told, given the limited mobility, the sedentary lives many patients live here at Bethesda. Thing is, Bob hasn't been exactly sedentary or bedridden while at Bethesda. He's been up and at 'em by 7 nearly every morning, and goin', goin' goin', with PT, OT, TR, wound vac changes, MIST therapy, doctor's visits, psychiatrist visits, chaplain visits, blood taken, meds and IV changes, meals and vitals snuck in between . . . oh, let's not forget the showers, clothes changes, several visits to the Throne (aka, commode) and maybe a power nap or so along the way . . .and, he's been taking a full aspirin and Plavix since his last MI. So, the latest "setback" doesn't mesh with what we're told is "the norm" at Bethesda, has defied all the "rules" that we're following, that are supposed to protect him from such potentially dangerous setbacks, and that's probably what set this li'l redhead on a crying jag, demanding to see Bob's doc ASAP because I need to talk to him now.

Because one more "setback" in Bob's world is a big fucking deal. One more sign to him, that he's not getting better, that things just ain't going his way, that so far, setbacks overshadow and outnumber progress about 10000 to one. A step forward is hardly perceptible. A step backward covers a helluva lot of ground, driving Bob deeper into the thick, sopping quick-sand world of despair, depression . . .

In other words, another "setback" is something Bob doesn't want to hear. Doesn't need to hear, but how do we ignore a leg that's swollen to 3x the size of the other, so taut and heavy with blood it's shiny-smooth to the touch and bleeds with the slightest bit of pressure. . . all thanks to a blood clot, which reminds us, with blinding clarity, that a previous cancer and treatments that occurred decades ago have left indelible marks in so many ways, most astounding, rendering Bob's blood prone to hyper-clotting. . . and blood clots are what caused three heart attacks that nearly killed him . . . so, when his doc and NP at Bethesda talk about blood clots as being "no big deal," that they'll tweak this med, take that one away, add another one—well, that's all it took to get this li'l redhead's head to start spinning and words to start spewing and tears to start falling and there's no stopping till someone hears her, till an intervention or something more effective is done.

"You can't treat a blood clot without taking into consideration Bob's heart, and Bob's past cancer history and all the complications he's had this past year—they're all inextricable, all impossibly inseparable, that by messing with one thing without taking into consideration the whole picture can send Bob into a tailspin . . . ultimately, he's the one who suffers from the tweaking and tinkering—I've seen it more times than I can tell you . . ." I go on to say that Bob's cardiologist at the U is one of the only docs who has truly shown a personal, vested interest in Bob's complicated condition, being he's saved Bob's life not once, but twice, and he is the only person (God's not a person. . .) who is allowed to make any changes to Bob's heart/blood meds, and that they have to call him before any changes to blood thinners are made. . . I think I scared the bejeesus out of Bob's NP with my crying jag, because she said she'd make sure Bob's doc would be in ASAP the next moring, and to make sure I was here, to tell him everything I just babbled to her (she didn't say babble, but that's essentially what I was doing . . . )

Next day, Bob's doc at Bethesda (have I given him a name yet? I don't remember. . . will have to look back on previous entries before I anoint him . . .), and in his typical confident-bordering-on-arrogant manner, starts giving me the spiel about how any patient who develops blood clots is given the Coumadin/Lovenox combo and it wasn't really necessary to call Bob's cardiologist at the U because—I interrupt him, my voice thin and quivering, tears pooling in my eyes, telling him that I've seen, more times than I can count, doctors, who don't know Bob's complex medical history, doing things to him, based on "average patients" that result in horrific outcomes. In the next hour, our conversation turns into a very revealing one; the staff at Bethesda had no idea, truly, the extent of the past year of Bob's life. They get patients from hospitals with specific, immediate instructions and often don't delve deeper into the patient's background because it often isn't necessary. . .

I find out that they had no true knowledge of Bob's year long journey, that the current cancer was a secondary cancer resulting from the treatment of his Hodgkins, over 30 years ago . . .that he suffered two heart attacks in the past year, subsequent and countless complications along the way, wasted away to 100 lbs. in the midst of it, that his surgery was supposed to have been in April, but had been postponed till August, thanks to the MIs (the NP didn't even know that Bob's wound site was the result of the 13 hour surgery to remove a tumor the size of a softball . . . ), that we still don't know if he's "cancer-free," because the tumor had infiltrated a vein that leads to the lungs, a primary source of metastasizing . . . I looked at them with something akin to horror. How could you not know all of this?!? How can you give Bob the best and most appropriate care possible without knowing all this?!

I learn of another huge gap in the healthcare system: patients that come to a facility like Bethesda arrive with basically only the instructions they are given from the referring hospital. In Bob's case, the only "active" issues were the IV nutrition (the TPN), and the IV antibiotic which was prescribed to treat the wound as it heals. Anything else is essentially ignored. Bob doesn't have "active" oncology issues, doesn't have "active" cardiac issues, doesn't have "active" orthopedic issues, from the Bethesda point of view, because the U didn't specifically mention them . . . but that doesn't mean they don't exist!!!

"What the hell??!!?? So, seriously?!? A few bags of IV medications are what 'qualified' Bob's stay here?!? It doesn't matter to you that he's had a year long battle with cancer that's wasted his body to nothing, doesn't matter that he's had two heart attacks (technically three, but who's counting?), countless complications as a result . . .doesn't matter that he endured a 13 hour surgery that removed a tumor the size of a softball and a chunk of his pelvis, as well . . .doesn't matter that he has no function or feeling in his pelvis, that he's shitting in a diaper, peeing in a tube, that you guys think that because he doesn't need TPN or an IV antibiotic any longer that he's 'well enough' to go home?!?" Clearly, I don't understand the rules of this game, never have, never will . . .

Bob's doc listens patiently as I release my tirade, and as the words tumble from my mouth, I become more and more clear with how this game works . . . kind of. Patients are referred to Bethesda to be treated for specific issues, nothing more, nothing less. . . they treat the issues "at hand" but don't bother with any residual, "unmentioned" issues. . . as we talk, I "get it," but really, I don't "get it. . ."

"But seriously??? How can you treat his blood clot without knowing about his previous heart history, or about his previous cancer history?!?" I ask, incredulously. "None of what's going on with Bob is a separate issue; one begets the other and vice versa—I've seen it more times than I can tell you, it's all entwined, all related, you can't treat one issue without knowing about the rest. I'm not a doctor, but I'm telling you what I've seen, for a whole year and counting . . ." And how can you do PT and OT without knowing that a huge chunk is missing from his pelvis and all that went with it—wouldn't that dictate what can be done with PT/OT?!? And right now, I tell his doc, this is what Bob thinks his life will be like. This is it. Sitting in a wheelchair. Dependent on someone for every aspect of his life. Hasn't been out of a hospital in over three months. Prior to that, spent more time in a hospital than at home for the past year. And, no one has told us that things will be any different. Not a fucking thing. And you wonder why Bob's depressed beyond belief and not responding to your medications, I ask.

We came here so Bob could rehabilitate from the surgery but his history is so much more than that, and we've never been given a long-term plan set up for us, I continue. . . there's so many things unaddressed: the colorectal/urology issues, the wound plan, follow-up with the orthopedic surgeon (are the pelvic bones shifting and healing like we were told they should? We have yet to have follow-up x-rays or anything regarding that . . .), so many follow-up specialists that have yet to get back into the picture since the surgery. . . who the hell is going to fix all that for us? Answer those questions? Address those concerns? Put all the pieces of the puzzle together for us?

Bob's doctor listens to me intently, and finally, when I've lost steam and my story sputters and stalls and I start repeating myself, he tells me that this is the first time he's had a full, detailed account of what Bob's been through this past year. He tells me that when patients come to Bethesda, they come with specific instructions on what to treat, and not much more. Even though they get the full report from the referring hospital, so many patients have critical, immediate issues to treat that everything else becomes secondary. He asks what plans were made at the U for followup for Bob. Nothing, I tell him. There have been so many interruptions, so many setbacks, critical issues to deal with that any kind of "moving forward" plans have been thwarted or simply not been addressed. So, "setbacks" have been the norm, not the exception, and is beginning to feel like they'll never go away.

In his take-charge manner, Bob's doc says this is his specialty. He loves putting intricate, complicated puzzles together, orchestrating the people needed to address all the things I brought up. He tells us he will set up follow-up appointments with urology, colorectal, oncology, orthopedic, psychology, physical medicine and rehab . . . as our conversation continues, I start to feel a heaviness lifted from my shoulders, a fog dissipating from my brain, my heart rate slowing, my breathing less labored . . . I look to Bob and his expression has remained the same, throughout the hour-long conversation. Flat, expressionless . . .

So, all this rambling means many things, most of which meaning there's not enough time on this earth to begin to explain . . . to someone who's recovering from a certain hell, so much of it, likely, are things none of us will ever begin to comprehend. As such, if there's one thing to come of all this, it's the lesson in what not to say to someone who has spent the entire year fighting for his life, to someone whose been dragged through hell, hung up to dry and then dragged through hell again, lather, rinse, repeat.

You do not say, "Bob, I know this is easier said than done, but you have to keep fighting. . ." Because what you'll get is a look that would spear you to the wall, if it could. Followed by, "What the hell do you think I've been doing this whole year? Sitting around with my thumb up my ass?"

You do not say, "Don't be discouraged by the latest little setback! Didn't you hear them? It's super-common! It's no big deal!" A year filled with setback after setback doesn't make the road any easier. If anything, it saps the energy, burns what little resources are left, as though "setbacks" are the way life will be from here on out. to hear the tiresome pronouncement. Don't act surprised if you're delivered a well-placed bitch-slapped across the head after uttering such a statement. You will have deserved it.

You do not say, "Bob, we knew this would be a long, hard road, and the harsh reality is that only you can do the hard work of recovery . . ." Because that would be followed by, "So fucking easy for all of you to say isn't it? In your perfectly healthy bodies, that do what you want them to do, whenever you want them to do, whatever you want them to do . . .I'd love for you to live in my body, for just one day, then come back and say that to me . . . "

You do not say, "Bob, we were told that if you didn't go through with the surgery, we would have been preparing for hospice . . ." Because that would be met with, "Right now, that sounds so appealing—at least I'd have died with my dignity and self-respect in tact. . . "

You do not say, "I know you'll get better, Bob! I just know it! I feel it in my heart . . . " Because that will be met with, "You don't know shit. Nobody knows shit. No body knows a fucking thing, not even the doctors . . . "

You don't say, "Leave it to God, Bob, don't fight so hard, don't try to control what you can't control. . . ." Because that will be met with, "If I don't fight, who the hell will do it for me? There's no guarantee, no assurance that God or anyone else is gonna do it for me . . ."

You don't say, "God doesn't give you any more than you can handle, Bob." Because we see every day, people at Bethesda, people on the nightly news, that have definitely been given more than they can handle. And there are days, many days, where I've felt that Bob has been given way more than a person could, should ever have to handle in a lifetime . . . I know very few people who could have withstood all that Bob has been dragged through . . . but, how much more can a person expect to "handle?" An easy cop-out "thing" to say when we're secretly grateful God hasn't tested us in this way . . .

Let's get one thing straight, peeps. God had nothing to do with any of this. If there's one thing I do know, it's that God doesn't make this shit happen to people and God doesn't fix it, based on how hard you pray, how much you believe, how much you "sacrifice." World doesn't work like that. If you really, truly believe that, then you be the one to tell that to the families of the two women who were senselessly shot in convenience stores in small-town Iowa, by some fucked-up 17 year old who laughed his ass off while being hauled away by the police. Tell me—no tell their families—the reason behind that. And don't give me the shit, "Only God knows the reason. It's not for us to know." No, the reason we don't know is simply because there is no reason. Life never makes sense. Even in wonderful events, it doesn't make sense. It just is. Leave it at that.

Or a variation on that theme: "You're so strong, Bob! The strongest person I've ever known!" As if he has a choice. As if those who die from illness, injury or other adversities in life weren't strong enough . . . see where that "logic" is going, peeps? Again, were the women shot in the Iowa convenience stores "not strong enough" to overcome their adversary? Oh, no wait, I forget the other "argument" that neatly sweeps things under the rug: that it was their time, that God wanted them . . . in that horrific way . . . again, tell that to their families . . .

The only reason I know what I know, is because if God does make this kind of shit happen to people, then that is not the kind of god I will ever follow. Ever. And I'm pretty sure my God's okay with that. Best we can do is simply say, "I'm so sorry." or "I don't know what to say," or "I'm keeping you in my thoughts and prayers." Simple, peeps, it really is . . .

And, after that rant, because sometimes that's what a girl's gotta do or her eyes will pop right of her head if she doesn't let off some steam, I wanted to share some amazing things that happened today. . . in spite of feeling like shit today, Bob went to all his PT and OT sessions (he'd missed most of them all week), and bent over, pulled a pair of pajama pants on, stood up and pulled them up to his waist. By himself. Followed by a pair of socks.

Big fucking deal? You bet it was. Last week, he could barely bend over to scratch his ankle; last week, he needed help with all his clothes. Bob's OT and I were ecstatically astounded at the very visible progress, in spite of dragging a 20 lb. blood-engorged limb along for the ride. He gave us that "look," the one that said very clearly, "So I pulled up my pants. Who the hell cares?" . . . all I can do, in spite of the looks, is hold onto moments like these, cling to them dearly, like a toehold on a sheer-faced cliff. And cheer him on, in spite of the looks. Being careful what I say to him, after the cheer. . .

Again, thanks for letting me vent. You know as well as I do that the perspective will probably change again, probably by the time I wake again, in the morning . . .