I know, I've needed to give a "Bob Update" for a while now, but the honest truth is, on one level, things have been peaceful and uneventful out here at Wrenwood, and I don't have a whole lot to share, days are quiet and kind of boring, not that I'm complaining, mind you . . .we get up whenever, (usually never later than 8 a.m.), watch a little morning news, then breakfast (not every day, as Bob's never been a big breakfast kinda guy, just when the mood strikes) . . . a nurse or therapist might visit in the a.m., after which I'll walk the dogs, then get Bob's shower, dressing change and compression stocking done, make a little lunch, throw some laundry in, clean the joint (soooooo much nicer not having the stress of house showings hanging over our heads . . .), maybe run an errand or two (while calling and/or texting Bob to the point he gets downright irritated with my "checking in"), then home to do stuff around the house—maybe finish laundry, empty the dishwasher, whatever, while Bob naps. . .
Before I know it, we start the evening routine: I bang around in the kitchen getting dinner ready while Bob watches some TV or surfs the web. We eat, clean up, I might work on the computer a bit or putz around the house, Bob sometimes joins me down in his office or more often, just watches some boob tube (a new fave is Criminal Minds—dear god, what a nightmare-inducing show that is—I've only watched one full episode but already I'm convinced pretty much everyone I know or don't know is a serial killer . . .) and before long, it's time for the nighttime leg wrap, dressing change, evening meds, then beddy-bye.
Days are punctuated now and then by a visit from Penny and Jim or maybe my mom or one of my sisters. We've been trying to get out for dinner once a week or so, or try an outing to the grocery store or something, if Bob's feeling up for it and the weather doesn't seem too treacherous . . . I've have had a lot of freakin' snowblowing/shoveling/roof raking on the agenda lately, too, which seriously gets in the way of getting anything else done. f'n winter, so done with it, I just might turn serial killer if it doesn't end soon . . . So, that's it, our quiet little world, in a nutshell . . . On another level, there's so much going on, internally (brain-wise, heart-wise, figuratively speaking-wise), that it's almost impossible to even start . . .
Seven weeks at home without incident, we'll start with that. A record streak, in the 15 months that this Krazy Karnival ride's been churning and lurching and yanking us . . . Bob's appetite is still good, still getting good sleep, have had a few visitors and been out to eat a few times lately . . . he still gets around surprisingly well, despite having some increased pain in his right leg, zingers, we call 'em (most likely nerve pain, possibly because of the ones that were sacrificed from the surgery, but could also be related to the leg swelling/fluid pressure on nerves, or perhaps even the tumor itself growing and affecting more nerves), that's been acting up intermittently. It's not the kind of pain he had pre-surgery, which was a constant, debilitating pain; this pain is very unpredictable but insanely intense when it flares up. Thankfully, each zinger only lasts a few seconds, but the fact that they happen at all is torture enough. He rarely complains (throughout this whole ordeal, I could count on one hand the times Bob has even come close to what might be perceived as complaining. It's not what he does, just not how he rolls), but I know the zingers are happening when I hear him suddenly gasp, then his entire body goes rigid, his face contorts into a grimace, teeth clenched, eyes squeeze tightly shut, for a few moments, then he relaxes.
Sometimes, this happens over and over for several minutes, occurring in clusters throughout the day for a few days in a row. Other times, they're spread out to occasional appearances throughout the day. And sometimes, Bob can go for days without a zinger rearing its ugly head. Not sure exactly what causes them to flare up, but we're trying to observe what's going on when they happen, to maybe pinpoint triggers that might set them off (for example, he had them for a few days after the benefit; my "theory" was that he was sitting all day, for several hours, without moving around much, and then we took a break from wrapping his leg that night when we got home because he was so tired and just wanted to crash. Next morning, his leg had pronounced swelling and the zingers started. Then again, he had them yesterday, but there was nothing out of the ordinary in his schedule, his activity level or anything . . . . who knows . . . ) we're adjust medications here and there, as well as trying to get him up and moving around more, to aid circulation, get things moving, stretched out, to see if that helps.
Speaking of swelling, Bob's also experiencing some fluid build-up in his left foot/ankle (the good one) lately, enough that his hospice nurse felt it warranted few more visits from Laura, the lymphedema therapist who worked such wonders with his right leg. She came today and will come again tomorrow and Friday, to see if wrapping the left leg will help disperse the fluid and reduce the size, as it did for the right side. It's possible it could be another blood clot in that leg, but the only way to know would be by doing an ultrasound, which wouldn't change the treatment, but just give us a "for sure" answer to the cause. Bob's already on serious anticoagulants (which makes the probability of a clot slim, though not impossible), so there's nothing more they would do to treat it, other than time. Let's hope it's just "overflow" edema in the left side that will go down with the wraps . . .
We have an appointment with the U's Long Term Follow Up Clinic on Friday. The clinic specializes in treating cancer survivors, childhood as well as adult survivors. Kind of "after the fact" or perhaps "too little, too late" for Bob, I realize, but we were trying to get him into the clinic ages ago (at the request of the director of the clinic, who actually visited Bob in the hospital months ago, when he had his second heart attack—we were connected with him via the Palliative Care social worker who thought the clinic might provide us with support, services and valuable information that's more specific to him as a childhood cancer survivor. We were never able to make it to the clinic, as one crisis after another forced us to cancel and reschedule countless appointments. . .)
This appointment was rescheduled months back and I nearly forgot about it, until we got a call confirming it. We thought about canceling, as I had said weeks ago that Bob and I were more than done with the U, aka, Little Shop of Horrors, and never wanted to step foot in the joint again. But after thinking about it for a week or so, I told Bob I think we should keep the appointment. Yes, there's nothing they can do for Bob any longer, but I want them to see him in person, to hear his story first hand, in all its gory details. See, part of my time at home with Bob revolves around hours of internet and other research about childhood cancer survivors adn the long-term effects of the treatments given to patients. . . the things I'm learning is the stuff that keeps me up at night . . . well some of the stuff that keeps me up at night, anyhow. . . I want to head back to the U, let them know that all the research, all the data, all the shit they're doing behind closed doors in their labs in the "name of cancer research" is not getting out to the people who desperately need this information the most—cancer survivors themselves, as well as the general medical community. Never was Bob and/or his parents told of specific potential long term effects of the treatments he had over 30 years ago . . .
The Mayo has their own Long Term Follow Up study, which Bob has participated in for over three decades (ironically, just received the most recent survey to fill out just a few weeks ago) that parallels the U's. It's been discovered that late effects of treatments, as they've been observed and recorded, started showing up in childhood cancer patients very early on after modern cancer treatments were being implemented—some patients began having secondary issues within a few years of being "cured." Others have taken 5, 10, 15 years, even longer to show up. Some cancer survivors never have problems, but right now, as far as we know, there's no way to know who will and who won't. The U knows all this. The Mayo knows all this. St. Jude's knows . . . yet, despite all this amazing knowledge, the Mayo has never contacted Bob to get back in touch with them again, because of the patterns they've seen emerge . . . Bob is an anomaly in the picture, I get it, because there aren't many 30+ year survivors of childhood Hodgkin's (I learned that while attending a Cancer Survivorship Conference at the U last March. . .) out there. But that is changing . . . I asked the nurse at the U's clinic how they're tracking all this, how are they getting the word out to former patients that they've treated. She told me, "Well, there's really no way to keep track of all the patients we've seen over the years," to which I countered, "Well, somebody must be keeping track, because Bob keeps getting the survey to fill out . . ."
I ran into an old client of mine at the benefit; haven't seen her in years. She said she had heard about Bob's situation from a mutual friend and wanted to come to the benefit, to show her support, to let us to know she's been thinking of us and keeping us in her prayers. "You might remember that my brother is a Hodgkin's survivor," she said, "I remember we sometimes talked about him and Bob at my appointments . . ." Her brother has to be a good 10+ years younger than Bob, and he was older than Bob was when he was diagnosed—a teenager, if I remember right. I asked if he was being followed by an oncologist who's well-versed in the after-effects of Hodgkin's treatments, thinking that because he's much younger, things must be different for patients his age. She waved her hand, brushing off the question. "Oh, it's been over 15 years that he had his cancer, he's doing great—" I interrupted her, I'm sure with a wild look in my eyes, "Bob lived thirty years without any problems. Nothing. Thirty years in blissful health, now this . . . I used to say he was the healthiest person I know; now, he's the sickest person I've ever known—please, please tell your brother to get back in touch with someone at the U or the Mayo. I don't mean to sound like an alarmist, but if there's one thing I can tell you, it's that he needs to be followed by someone who is well-aware of the potential late effects . . . " Maybe it's just me, but I think she looked at me like I was teetering on the edge, and quickly excused herself, saying it was great to see me again and slipped into the silent auction crowd. . . I wish 15 years ago, someone had given us a foreshadowing of what might be coming down the pipeline. Then again, we might have reacted the same way she did . . . who's to say . . .
The knowledge is out there, sequestered within the brick walls of academic medicine, shared among smug researchers who pat themselves on the back in a self-congratulatory manner, how astute we are for our amazing findings, yet they seem to be keeping this potentially life-saving information from the people who need it the most . . .
Nearly 4 years ago, when Bob suffered his first heart attack, the cardiologist who placed his stent in the middle of the night—a well-known and well-respected top heart doc in the Twin cities—was the first person to suggest that the heart attack was related to his childhood cancer. But even she was unaware of the gravity of the situation, and mentioned it almost as a passing comment, "Oh, we see this a lot, heart problems in cancer survivors." That's it. Not, "Bob, you need to get your ass back down to the Mayo or over to the U now and get hooked up with doctors who are well-versed in patients like you!" Nope, just a casual comment made, nothing more. Unbeknownst to us, as horrible as that first heart attack experience was, it was only the initiation, the hazing, if you will, into the real nightmare that would appear in Bob's life three years later. That cardiologist's words have echoed endlessly in my mind over the past 15 months. . . we see this a lot in cancer survivors . . .
Bob's primary doctor in Edina, who had been treating him for years, also knew of Bob's childhood cancer history, knew that his heart attack 4 years ago was likely due to effects of radiation 30 years prior. Yet instead of digging deeper, ruling out all possibilities, insisted the pain Bob started having in his leg in October '09 was due to a herniated disc that "appeared" on an MRI of his lower back. This doctor pushed for back surgery, ignoring our requests to do an MRI on Bob's pelvis instead of his back, condescendingly telling us, "it's called referred pain—that's what happens when you have a herniated disc." Or the orthopedic surgeon who performed the completely useless back surgery in December of '09 , who also had to be aware of Bob's cancer and cardiac history . . . or the countless medical professionals who have been clients at our salon, who told me, over and over and over, "Oh, yeah, that's really common, heart problems in cancer survivors," yet never, never, never, never went beyond that, to say, "Bob is dealing with some serious shit—he must be seen by a doctor who specializes in cancer survivors. . . " All medical professionals, all coming into contact with patients like Bob all the time, yet none knows anything. . .
I've learned that Hodgkin's lymphoma is the "golden child" of cancers, with a remarkable "cure rate." Ridiculously enough, Bob and his parents were told that if one had to pick the type of cancer to get, Hodgkin's is "The One!" because of its high "cure rate." From what I hear, people are still told this, even though treatments really haven't changed all that drastically from 30 years ago. What they fail to tell patients is the dirty little (HUGE) secret of Hodgkin's: that the late-effects of the treatments can very likely come back to haunt a survivor in horrific ways—a plethora of cardiac issues, organ failure, secondary cancers . . . and research seems to indicate that the younger the patient is when diagnosed and the more time that has passed since treatments, the more severe the post-treatment effects are . . . Bob was 10 when he had Hodgkin's, 30 years had passed when he had the first heart attack . . . I can't help but think, over and over and over, if that cardiologist at United, 4 years ago, had had even a little more knowledge about the ramifications of a 30 year childhood cancer survivor with new cardiac issues . . .or if Bob's primary doctor knew more . . . what could have been prevented, or at the very least, could have decreased the severity of the nightmare . . .
This is where my anger is, peeps. Has never been at God, just for the record. Ever. Always been hyper-focused at a reactive (instead of proactive) medical system . . . and it's enough to drive a certain li'l redhead mad with regrets, with "if only's," "what if's . . . " and is probably making all my dear readers wish I finally just shut my effin' piehole . . .
