This story seeks to increase awareness and understanding of the unique needs of individuals diagnosed with life-changing illness or injury and their families by providing insight into the life of a man as he went through diagnosis and treatment of brain cancer (Glioblastoma Multiforme - or GBM).
Following is a guest post written by my sister Nancy:
Bittersweet...
I've often heard that word but have never felt that I had an appropriate time in my life to use it, until 6 weeks ago.
Giving birth on March 24, 2013, to my firstborn was hands down both the most amazing and the scariest thing I have ever experienced. I had envisioned the moment of his birth in my head many times over the previous 9 months and it always played out perfectly, except for one crucial part ... mydadwasn'tpresent.
The day I found out I was pregnant, even with as much excitement as I felt, I remember thinking to myself, "This sucks - it's so unfair that my dad won't be here or ever know his 7th grandchild." I tried not to let myself dwell too much on that fact over the months ahead, but always in the back of my thoughts I felt very bitter.
On the day of my son's birth, I tried to keepittogether so as not to make the special day sad, even though Dad wasn't there, but to make sure it was memorable. I grasped tightly to one of my dad's handkerchiefs (or "hankies," as he called them) during my entire labor process. I kept hearing my oldest sister saying to me "Remember this, remember this!" and I wanted to focus on especially that. My whole life I strived to make my dad proud of me and he always told me that he was, and I know without a doubt that he was with all of us in that delivery room that day at the exact moment of my child's birth and that he was so proud of me, my mom, and my sisters knowing that life really does go on - just not always the way we envisioned that it would. There was complete joy and happiness, and there were big smiles again in our lives and yet another legacy to carry on the family name.
The nurses allowed Nancy to wear her Brain Cancer Awareness bracelet during the entire labor and delivery process.
I look forward to having Crosby's aunts, uncles, cousins, and Gran-Gran telling detailed stories in honor of his Gramps so that my son will know my dad. I've decided that I'm not going to waste precious time being mad or even bitter that Dad wasn't physically there for that big moment in my life; instead I will embrace the fact of all the people I love most on this earth were by my side.
Sometimes when I think back to during the time when my dad was sick, I remember a detail that I had forgotten or overlooked in my memories before.
Today I remembered his dog tags.
When I was growing up, whenever I asked my dad about his experience serving in Vietnam, he always talked about how his job there was to guard a building with weapons in it, often on an overnight shift.
My dad was never a "night owl;" as far back as I can remember, he was much more of a morning person, and I guess that was true when he was in the service, too, because he often commented when he talked about that time about how hard it was for him to stay awake on his overnight shifts. He said he usually ran around and around the building he was assigned to guard so that he would stay awake and alert during those shifts. The only problem with this plan, he reported, was that he had to wear his dog tags at all times and, as they hung from the chain around his neck, they drove him crazy bouncing against his chest as he ran. Ever the improviser, though, he thought of a solution to this problem too: he took the dog tags off from around his neck and put them in his pants - in his jock strap, to be exact.
It's kind of funny to think that a person can be proud of someone else before that person was even born or before they knew each other, but I know it's possible, because, picturing my dad as a young soldier in a foreign land, before I was born, doing what he had to do to get his job done and to defend our country, I feel such a sense of pride and respect, the same pride and respect that I have had for him throughout my life.
But those dog tags from Dad's days in Vietnam aren't the ones I think about most often these days. The dog tags on my mind are the ones that Dad wore on a chain around his neck as a 66 year-old man as he trained for the Ironman triathlon. He tucked those into his shirt as he rode his bike or ran, and, the day before he became disoriented on a run and our campaign against his brain cancer began, the chain that held those dog tags broke. And so, on that fateful day, he set out for the first time in many months without any form of identification at all.
I think when most people think about dog tags, they think about toughness. That's what I think about, too, because it was that, along with his strength and resilience that day that allowed Dad to dig deep enough so that, even in his state of confusion coming from the tumor the size of a racquetball in his brain, he could remember not just his home phone number (which was called first by the police but went unanswered because my mom was out of town) but also my aunt's cell phone number, which he also recalled and then gave to the police who had been called to the scene because he somehow also remembered that my mom was out of town that day and realized he needed to call someone local.
I have spent time, some while Dad was sick and even more since he went on ahead, thinking about how things would have likely gone had he not had the fortitude to pull out that information in those few moments before he was taken to the hospital by ambulance, before he had a couple of seizures, and before he quit breathing and had to be put on life support temporarily until he could be stabilized. It is nothing short of terrifying to think that all of that would have been going on and no one in our family would have been able to be notified so that we could all get there to be with him. It's horrifying to think about the fact that he would have been a Missing Person for an undetermined amount of time, because, with my mom out of town overnight that night, it is highly likely that no one would have realized that he didn't make it home after his run that afternoon. We would not have known that anything out of the ordinary was going on. Again and again, it hits me that, even with as bad as it was when he first got sick and throughout his illness,it could have been worse. At least we knew where he was, and what was going on with him, and at least we were able to be with him.
Dad, wearing the dog tags, competing in what ended up being his last race, one month prior to his diagnosis of brain cancer
In the days just before and just after his surgery, Dad worried a lot about what he called "loose ends." As it would be for any of us whose life was put on hold in the blink of an eye, it was unnerving and extremely anxiety-causing for Dad that he had not been able to prepare for the time he was having to miss work and everything else for which he considered himself to be responsible. In the midst of the constant stream of worries he had about his health and about needing to take care of the responsibilities in his personal and professional roles in life, he said he wanted to get the chain that had held his dog tags fixed, "so that I'll have it ready as soon as I can get back on the road."
And so, sitting in the hospital room with him in the Neuro-ICU, I searched on the Internet and found a company that sold replacement chains and ordered one for him; he was visibly relieved when I told him that a new chain was being sent to him in the mail. And that's where the meaning of those dog tags deepens in our story; instead of standing only for toughness, Dad's dog tags also represented Hopefulness, and we desperately needed everything we could get to bolster both of those qualities as we entered into a more grueling battle than any of us could even imagine at that point.
In April of 2004, my dad and I traveled to St. Louis to watch the U.S. Olympic Team Trials for the Women’s Marathon. Going to see the marathon trials was a Bucket List item for both of us. We spent the night in a hotel near the start of the race the night before; we were both so excited that we could hardly sleep all night.It was an early race start – 7 a.m. – but we wanted to be sure to have a good view in the crowd of spectators at the start of the race, and so we got there almost an hour early.I thought it was extra-cool that the event started at Frances Field on the track of my alma mater, Washington University in St. Louis, which was also, incidentally, the site of the 1904 Summer Olympics.
Over the course of my life, I watched countless races both in person and on TV with my dad. Because he was always much more up-to-speed than I was about the field of competitors, he typically told me which runners we should “pull for,” as he put it. He didn’t have to tell me that day, though; we were both long-time fans of Deena Kastor and had been following her running career since before she was married, back when she was Deena Drossin. She had run the fastest debut marathon for American women in 2001 and was the national champion in women’s cross-country. A California native, she was a four-time SEC champion in track and field as a collegiate competitor at the University of Arkansas, which was where Dad had started following her running career in the news. She held several U.S. records in running and was internationally ranked, twice finishing as the runner-up at the World Cross County Championships, the most important competition in international cross-country running.
Our favorite, Deena (or "Deener," as Dad pronounced her name), is sporting a #1 here.
As Dad and I sat in the front row of the stadium seats at Frances Field that day, we watched the runners stretching and milling around nervously before the start of the race. Dad had a copy of the course map and had circled in red the points where he thought we should stand during the marathon to watch the runners go by. The course consisted of 3.5 loops through Forest Park, a 1300+ acre park located in the western part of the city, and ended at the World's Fair Pavilion in the park. The layout of the runners’ route made it an ideal race to spectate, and, as soon as the starting gun was fired and the athletes completed four laps around the track and then raced out the gate onto the street, Dad and I high-tailed it out of the stadium to claim our spot on the curb at the three-mile mark.
Exiting the track for the on-road portion of the race
A runner named Blake Russell took the lead early on and was about a minute ahead of Deena and four other women when they came by us three miles into the 26.2-mile long race. Deena and a couple of the others were giving out occasional high-fives to some people standing on the curb as they passed by; Dad called out “Good pace; don’t lose touch” to her, just like he’d advised me in countless races of a much smaller scale. She looked right at him and gave him a nod as she and the others in the pack flew by, and then Dad and I rushed to get back in the car so we could make it to stand around the 7-mile mark before the leaders got there.
Just a few minutes after we’d staked our claim on our spot at that point, we saw the front pack racing up the hill in front of us. Deena had closed the gap on Blake by about 20 seconds, but the rest of the leaders were right on Deena’s tail. “Pick it up half a step, but don’t go all out yet,” Dad advised her in his regular-speaking voice volume as she sprinted by. I didn’t think she’d heard him until I saw her flick her right hand out to the side in a quick gesture of acknowledgement and then noticed her get a little higher up on the balls of her feet in an obvious effort to pick up the pace.
Blake (#4) in the lead at Mile 12
Our next planned check-point was at Mile twelve. There was an aid station there with all different kinds of water bottles on the table, each marked with a different runner’s name and no doubt filled with a specific concoction of that competitor’s specifications. While we waited, Dad and I joked around about trying a drink from the various bottles to see what was in each one, but, when he saw the runners coming around the corner, he got serious and started bouncing on the balls of his feet like he always did when he was nervous. Blake was still out ahead about the same distance. Deena grabbed her water bottle from the table and then side-stepped to get out of the way of the other runners coming up behind her as she stopped to take off her shoe; apparently, she’d felt a rock in there and wanted to try to get rid of it. She quickly put her shoe back on, took a swig from her water bottle, tossed the bottle down, and then bolted ahead to get back in the race. She quickly caught and picked off the other front runners who'd passed her except for Blake, who had increased her lead to about a minute again.
Dad and I raced to get to the 15-mile mark and were excited to see that Deena had lessened the gap to only about 20 seconds by then; “Keep it right there! Pace yourself; you’re right where you need to be,” Dad told her in a conspiratorial voice. She looked at him and gave him a quick nod as she ran past us. It was so impressive to see how fast the turnover rate of all of the runners’ legs was as they went by; they made it look almost effortless, but we knew it was far from that at the pace they were putting in.
Next Dad and I positioned ourselves near the 19.5 mark, and a few minutes later we saw the women approaching. Deena was in front this time, leading by just a few seconds over Blake, who was tailed by about 30 seconds by another runner, Colleen De Reuck, a 40 year-old South African native who became a U.S. citizen just after the previous summer Olympics. As Deena got closer to where we stood, we saw her glance back over her shoulder a couple of times to gauge the position of the runners behind her, a move that I knew from my days in competitive running that Dad did not think was good strategy. “Don’t look back – it shows weakness!” he advised adamantly as Deena flew by us, and again she gave him a right-handed sideways wave of recognition.
After the rest of the front runners passed by, Dad and I decided that we wanted to go to the end of the course to try to secure a good spot by the finish line. We parked and walked towards the big Finish Line banner, and we were thrilled to see there was room just past the tape near the media truck. The race was being announced in a play-by-play fashion over the loud speaker, and we listened among the other spectators to hear. At Mile 22, Deena was still in the lead by a small margin, and Colleen had overtaken Blake. Over the next couple of miles, the crowd alternately grew quiet and cheered as we heard Deena’s lead being decreased by Colleen little by little, until #2 De Reuck became #1 and then continued to forge ahead to build her lead on Deena and the rest of the field.
At the finish, thousands of fans holding little American flags lined the streets. Someone held out a big America flag on a pole to Colleen about 200 meters before the tape; Colleen grabbed it and crossed the finish line in first place, carrying the flag, with a huge smile on her face, setting a U.S. Olympic trials record with her time of 2:28.25. (Her win qualified her for her fourth Olympics - pretty impressive at age 40!)Deena was the runner-up and finished strong with a time of 2:29:38, followed by Jen Rhines, who had run in the lead pack the entire race and finished third in 2:29:57. Blake came in fourth with a time of 2:30:50.
Colleen De Reuck - winner of the 2004 Olympic Trials Women's Marathon
For the first time in history, the top three runners in this event all finished in under 2 hours, 30 minutes. These three women were draped in huge American flags as they climbed up onto the awards podium a little while later to accept their medals and to claim their spots on the U.S. Olympic Team.
After the runners had come down from the stage and the frenzy had died down a little, Deena happened to look up and see us at the edge of the crowd. With the flag still draped over her shoulders, she walked over and called out “Thanks for the advice!” to Dad. “Sure!” he responded casually, as if we stood around talking to Olympians every day. She gave us a wave and stepped off into the swarm of reporters, and we turned to find our way back to the car, tired but excited from our big adventure.
A few months later, as Dad and I watched the Olympic women's marathon on TV at our respective houses, I thought back to the Trials and to the advice he’d given out to Deena during the race. Deena’s third place finish in the marathon in Athens was one of the highlights of the 2004 Summer Games. She toughed out the extreme heat, paced herself just right, and made our country proud when she stood with the olive wreath on her head to accept the bronze medal. As I watched her going the distance over the 26.2 miles she ran that day, I never once saw her looking back. And now, remembering back to Deena's big win that day, I can’t help but think that, along with strategies of her coaches and the wisdom she'd learned along the way as a professional athlete, she also had my dad’s voice in her head, urging her on, telling her she was right where she needed to be, just as I have in mine each and every day of my life.
I suppose there comes a time in the life of almost every person with a terminal illness when they and the people around them realize they have turned a corner that is not for the better as they had hoped. It’s that day, that hour, that moment when the stakes are changed and so is one’s perspective, when the focus of treatment becomes different from when it was a Cure.
I think that Turning Point in Dad’s illness was different for my mom, for each of my siblings, and for me. For Mom, I think it was on our trip to Duke, first when she realized that Dad’s concept of time, which had always been absolute in him, was totally gone, and then when we got to the Brain Tumor Clinic and she noticed that Dad was the only patient there with his level of impairment. As we rolled down the interstate and then as we rolled his wheelchair into the clinic the next day, her hope for a Cure was dashed. (Side note: People around that time kept telling us that we just needed to get used to a New Normal, and every time I heard that, I wanted to scream, “TO HELL WITH THE NEW NORMAL! I WANT OUR OLD NORMAL BACK!”)
Our brother Lee has said that he saw the changes in Dad as so blaring when he saw him around Thanksgiving that he felt in his gut that Dad was not going to get better.
For my sister Jennifer, the Turning Point came on the afternoon when she was at our parents’ house alone with Dad before his second hospitalization -- not when he fell, but after that, when he was in the bed, looking so frail, so helpless, and with his breathing so labored that she felt compelled to videotape it so that she could believe it, process it, and document it.
The Turning Point for my sister Nancy came a little later in our story, on the day after we brought Dad home from the hospital for the last time, as she listened to his voice get weaker and weaker and as she watched him, wrapped in blankets as if he were in a cocoon, being picked up by our husbands so they could move him from the bed to the couch. He was so afraid that he wouldn't be able to communicate with us for much longer. We were so afraid that he would fall off the couch because he could hardly move and that it would hurt him to move him. We were all just so incredibly afraid.
The Turning Point for me came as a result of a one-two punch on the second full day after Dad was moved out of the ICU into a regular room, three days before New Year’s Day and two days before we took him home. The oncologist came by for his morning rounds and told Dad “the only thing in the way of going home for you is your strength.” He ordered more OT and PT, and thus the gauntlet was thrown down; so depleted and yet so determined, Dad began talking about how he was going to exercise and eat, “even more than before,” he said. “I just want to do whatever it takes so that I can go home!”
That afternoon, the OT stopped by and, with Dad lying in the bed, had him do 15 minutes of arm exercises (“Is that IT??” I wrote in the margin of the Notebook when I realized the session was ending after that.), and then the PT came in and helped Dad sit on the side of the bed for ten minutes. After she had left, Dad realized that was going to be the sum total of his rehab activities that day, and he said, “I really think if I am going to have any chance of getting out of here, I should get up out of the bed.” I summoned the nurse and a nursing assistant and told them of our plan. Both were hesitant and doubtful, but, I thought, they don’t know my dad and they don’t know me– we ARE going to make this happen.
Gritting his teeth and with almost total support to keep his legs from buckling and then with full support to slide his feet one at a time across the floor, Dad made it from the bed to the hospital-grade recliner before collapsing into the chair. “Let’s see if you can stay up in the chair for 30 minutes,” the nurse said, as she and the tech left the room. The next half-hour seemed excruciatingly long; my sister and I tried to cheer Dad on while he gutted out each minute. He said he was cold and that he felt “achy all over,” and then, when his time was up and after we had helped him back into the bed, he got a terrible muscle cramp in his thigh and hip. We could actually see the muscles contracting as Dad writhed in pain after the transfer. We tried massage, we tried repositioning, we tried stretching, we tried a heating pad, and, finally, amidst deep and wounding pain, he begged for medicine. The orders on the chart didn’t include anything that would even touch the pain. DAMN the process that it takes to have to call the doctor to get permission for pain medication for a terminally ill patient. Isn’t losing control and slipping away torture enough? It took well over an hour to take away the pain from that horrible cramp in Dad’s muscle, and, as we learned over the next few days, the trauma of the episode could not be erased from his memory, taunting him and making him afraid after we left the hospital that we would not have enough medicine to temper his agony if the pain came back.
Despite the pain and exhaustion, Dad took in a lot of calories that day, so much that by that evening he was nauseous from having eaten so much more than he had been used to eating. When the dinner tray came that night, he said with a mixture of dread and fear in his voice, “Oh, no! Not food again! I can’t stand eating – it makes me hurt worse!”
Watching him that day, I could see the anxiety and the weight of the burden of the task that he saw before him; eating had become not just an obligation and an encumbrance but an insurmountable challenge for him. Over the course of the days before, he had started apologizing and making excuses about not eating whenever I walked into the room, and, when I saw the deep remorse and the sorrow in his eyes, I knew it was not really a choice that he could make anymore. His body just could not do it. “The Deal is off,” I told him that night with tears in my eyes. “I am so proud of you for trying so hard to eat, and from now on you can eat whatever you want, whenever you want, or not.”
“Will I still get to go home, though?” he asked me earnestly.
“Yes, Dad,” I told him. “I just don’t want you to worry anymore.” And then I turned away from him to hide the flood of tears that streamed down my face, an outpouring that would go on for the next week as we made the arrangements to bring Dad home, as we cared for him at home as his condition continued to worsen, and as we watched him slip away.
After the procession of doctors that came to consult on Dad’s case on the afternoon of Christmas Day, Dad saw me crying. “What’s wrong?” he asked me, with alarm in his voice.
“I’m just trying to figure out what to do to get you better, Dad,” I told him.
“Have you come up with anything?” he said hopefully. I sat down on the edge of his bed, looked him in the eye, and said, “I think you have to start eating, Dad. I think you haven’t been taking in enough calories to get stronger. I think you need to take control of your recovery by finding a way to make yourself eat.”
The room was quiet for a minute as Dad considered what I had said, and then he proclaimed, “OK, then. It’s a deal. I promise; I will start eating more, and then after that I can go home, right?”
“That’s right, Dad. It’s a deal.” Through tears, I told him goodnight, and then my sister Jennifer took over; I was planning to be back early in the morning so that I could catch the doctors on their morning rounds.
Dad was chatty overnight; despite saying many times that he was very tired, as usual he did not sleep at all. He said he realized that he was confused and that he didn’t want to tell the doctors because he thought then they wouldn’t let him go home. He dutifully ate some graham crackers and peanut butter and then some ice cream; it was plain to see that the effort he had to exert just to chew was exhausting to him.
Halfway through the night, my sister Nancy took a turn with Dad. “He is trying so hard to eat,” she wrote in the Notebook. Dad told Nancy that earilier that night he'd been at the hospital all alone; of course, she told him that he hadn’t been by himself, but it still made us so sad to think that he didn’t realize we'd been right with him the whole time. “I am very concerned about how sick I still feel,” he said. “I don’t feel like I’m getting any worse, but I’m definitely not any better, either.” He told Nancy that he couldn’t wait to see how proud of him I was when I found out how he had eaten during the night, a comment which, when I look back at it now, almost breaks my heart. I can only hope that he knew that I already was as proud of him as I could possibly have been for so, so many reasons and that he didn’t have to strike a deal or hold up what he thought was his end of the bargain for me to be proud.
I got back to the hospital just as the sun was coming up, and right away Dad told me to write down a list of things that he wanted to remember to ask the doctor, most of which centered around the fact that he wanted to go home. He said he knew that he needed to continue to “eat better,” and he listed several foods that he said he would try to eat that day, including toast and grits, a Diet Coke and a grilled cheese sandwich from Sonic, and a hamburger with mustard. “No cheese and no mayo on the hamburger,” he said. “Those have TONS of calories.”
“But Dad, we’re really wanting extra calories for you now,” I reminded him.
“Well, I guess I’ll have cheese on there, but I really don’t think it’ll be good with the mayo,” he said adamantly.
We got another visit from the consulting neurologist mid-morning that day; the doctor took about five minutes to do his “neuro checks” and then declared that Dad had “gotten better” since he’d seen him the day before. (“Better in that he is slightly less confused, but notbetter in terms of pain, eating, or sleeping, plus now Dad is really starting to realize just how sick he is,” I wrote in the Notebook after the guy left.)
Shortly after that, the stand-in oncologist reappeared and informed us that he was “pleased with the progress made over the last 24 hours.” He said Dad should not be given pain medication for problems with sleeping; he would allow Dad to take Benedryl for sleep and anxiety problems but that was it. He said Dad could probably be moved out of the ICU in the next day or two but that he felt Dad needed to "stay put for the time being" because he was still at risk of choking and because of the concerns about Dad’s heart. Um, his heart??? The last we’d heard about the PVC’s on the heart monitor had been the day before from the cardiologist, who had seemed confident that there weren’t any true heart-related problems going on. “I’ll have his blood counts rechecked today, too,” the guy said casually, still talking as if Dad wasn’t there and/or couldn’t understand what was being said, “but I expect to see improvement on those numbers too.” And with that, he was off.
Shortly after that, the blood tech came in, and, as had happened a few times over the past few days, she had trouble finding a vein. The nurse had informed us that long-term steroid use often makes the veins “brittle” and causes them to “roll,” both of which makes it hard to get a needle inserted. Through the multiple needle sticks, Dad grimaced but didn’t complain, and eventually the technician had partial success; she was able to obtain one of the two vials needed for the labwork. Dad winced as she put band-aids over the multiple places that she’d poked on Dad’s hand and arm; it was the ripping off of the tape and bandages that he hated the most, yet another thing for him to be anxious about and to cause him pain.
About an hour later, an x-ray tech brought in a portable x-ray machine to take x-rays of Dad’s chest. My sister and her husband helped the technician position Dad so that the films could be taken, and they noted in the Notebook that Dad’s rib cage was startlingly apparent. Despite all of Dad’s talk about what he was planning to eat that day, he continued to say he was “zero hungry” and even "I don't think I can stomach anything.”
"Sorry," he kept saying, with a guilty look on his face. And despite the doctors’ positivity about his improvement, we didn’t see it. We saw a man who was exhausted, frustrated, worried, and still somewhat confused, a man who was telling us that he just wanted to go home.
It was at this point that the idea of supplemental feeding was brought up. As part of the steps we were discussing, this is what I wrote in the Notebook …
I did not want supplemental feeding to be started. For the first time in Dad's treatment, there was disparity amongst us – really, at least from my perspective, between everyone else in the family and me. That was its’ own special kind of hell.
I knew that each of us wanted more than anything to figure out some way to help Dad, and I realized that having a consensus was crucial. It wasn’t that I disagreed with the fact that Dad somehow needed to get nutrition. I just wanted SO MUCH for it to be in a typical way, through eating on his own. I knew him as a super-determined man, a person who was more motivated and more physically fit than anyone else I knew, and I wanted him to be able to use his WILL and his STRENGTH to pull through this, even though I could plainly see that wasn’t possible. I was horrified by the visual in my head of him having another procedure and of how helpless he was in the bed. I didn’t trust anyone on the medical team, and I felt like even they weren’t on the same page about what the best thing to do to help Dad was. I knew that inserting a PICC line would be risky and scary and painful for Dad, and so NOT what my strong, proud father would have wanted. Hell, it’s not what any of us wanted for him, but we wanted him to get better more than we didn’t want him to have another procedure.
I see now that we were at different stages in our anticipatory grief, which, especially coupled with the worry and fear attached to the uncertainty of Dad’s condition and about our future as a family, was threatening in a way that even the cancer hadn’t been. I saw the big picture, the goal of somehow stabilizing Dad, and I knew we had to get there in any way that we could; I just couldn’t get past the terrible gnawing in my gut that I couldn’t quite identify, and I couldn’t shake the feeling that Dad was slipping away or even that quite possibly he was losing his will to fight.
A PICC line, by definition and per its acronym, is a peripherally inserted central catheter. It's like a large IV that goes in through the upper arm and is fed to the vena cava near the heart. From the way that I remember it, the idea of the PICC line was first brought up by Dad’s ICU nurse, who, like everyone else around, was concerned about his nutritional status. The nurse told us that an NG tube is usually the better option with which to start supplemental feeding but that, since Dad couldn’t even keep from pulling out the oxygen tube in his nose, she felt that a PICC line would be better.
As well, when considering an NG tube (which would go in his nose, down his throat, to his stomach), we also had significant concern about Dad’s medical history, which involved a botched sinus surgery by an ENT in the 1980’s that resulted in a orbital bone (under his eye) accidentally being scraped out during the procedure. The concern was that, instead of following the intended route, the NG tube would coil in the extra space in Dad's sinus. [While I was in college, he’d had reconstructive surgery by another surgeon to hold his eye in its socket because of that screw-up by the first ENT, which sucked enough already, but I never dreamed that the malpractice from the first surgery would cause Dad more pain, more risk, and arguably a more rapid decline at the end of his life this many years later. Remind me to find that ENT and punch him straight in the &^%@ one day.]
Thinking back to the decision of whether or not supplemental feeding support should be provided for Dad and, if so, how it should be done, it seemed like we were getting multiple opinions from many different sources; I remember standing just outside the glass wall of Dad’s room in the ICU and, despite the fact that none of the doctors on the case had ever even broached the subject, listening as his nurse, another nurse, and the PICC-line nurse talked about how they thought he should get the procedure done. “With a PICC line, he’ll be able to get nutrition and medications as well as blood tests done without additional sticks,” one of them offered. Dad’s nurse said that she could call and get the oncologist to order the procedure if we wanted. I wanted to scream, “NO WE DON’T WANT IT; WE DON’T WANT ANY OF THIS! WE WANT HIM TO BE WELL!”Why was this being discussed by the nursing staff and not the doctors that were involved? Why was this decision being put to us, or, specifically, to my mom, as if it was a now-or-never proposal? Why the hard-sell, all of a sudden? The room was spinning. I didn’t know the answer to those questions, but I didn’t know how else we were going to get Dad better. All I could do was pace the floor, cry, and hope that signing off on this procedure would be the right choice for Dad.
