Part 28 - Friends

Continued from Part 27

Dad, with Mom and friends on a camping trip several years ago

My dad was always one of those people about whom it could be said didn’t meet a stranger.  He honestly considered every person with whom he came into contact to be a potential friend, and he was consistently and genuinely kind in every situation.  He once told me that he didn’t see why everyone didn’t make an effort just to say hello to every person with whom they crossed paths.  “Even a dog knows it’s better to wag his tail to greet people he passes on the street,” he said.  

During the time that Dad was sick, we received many cards, emails, Care Page messages, and phone messages of concern and love, and we appreciated all of them.  On the front lines of the war we were fighting, we were frantically trying to keep our heads above water, plugging the holes in the dam for as long as we could, though, and the daily challenges and the shock with which we were have to cope were so overwhelming that it was all we could do to get it together to post on the Care Page every couple of days or so.  Returning individual phone calls and emails was just too much, both because our time was spent focusing on Dad and the things that needed to be taken care of as part of taking care of him and also because it was just too much to even consider detailing the tragedy of it all out loud outside of The Bubble of our immediate family. It was just one of the cold hard facts about how it was when Dad was sick; our propensity to reach out was thwarted by the outrageousness of what was happening, but unfortunately the closing of the ranks ended up being something that we later learned had affected how Dad felt about himself and his views about the impact and the quality of his own life.

Not long after the second round of chemo, Mom got a phone call from one of Dad’s best friends from the small town in Missouri where my parents used to live.  Dad’s friend said that he was going to come over to visit Dad.  Other friends had offered to visit many times since Dad had gotten sick, but up until that point we had declined their offers for several reasons, most notably that we were concerned that contact with others could impact his health both physically and emotionally.  We’d been warned by the oncologist about the dangers of germ exposure for a person on chemo.  Another concern was that Dad’s problems with memory and reasoning would travel like wildfire through the gossip lines and reach his coworkers and his clients, which would be a source of embarrassment to him.  Because of the logistics of caring for him while he was sick, Dad didn’t have a lot of privacy, and we felt strongly that we should do what little we could to protect him.

But this friend wouldn’t take no for an answer.  He insisted that he just wanted to check in but assured us that he wouldn’t stay long.  We were worried that Dad’s friend would not be able to hide his shock when he saw the changes that were so apparent in Dad.  As much as possible, those of us who were around regularly were striving to act as if it was no big deal that Dad had to use a walker to get around the house and that he needed reminders about what day of the week it was or the fact that he wasn’t going back to work the next day.

On the day of the visit, Mom and my sister helped Dad get ready, and he was seated in his chair in the den when his friend arrived.  The conversation flowed without too much of a hitch, and, after about 30 minutes, Dad got up to go to the bathroom (of course, without waiting for help).  He used his walker to slowly make his way down the hallway, and his friend didn’t miss a beat; he expertly disguised the shock and sadness he must have felt to see such drastic changes in the man with whom he used to share the course of their weekly Saturday morning twenty-mile runs.  When Dad resumed his position in his recliner, they visited for a while longer and then his friend said he had to go.  Dad was both exuberant and exhausted afterwards; he lied down on his bed to “rest his eyes” with a big smile on his face.

Of all the memories I have from during the time surrounding Dad’s illness and subsequent death, this is one of the ones that is guaranteed to make me sad to the core every time it pops into my head:

Late one night when I was sitting up with Dad several weeks into his illness, he abruptly changed the subject from whatever we were talking about by saying “I don’t even have any friends.”  

“Oh Dad, you are wrong,” I said, with tears in my eyes, “and I wish you knew just how wrong.”

With his eyes wide in amazement, he said incredulously, “I am?” 

“Yes, Dad,” I told him, “I know you are usually the one who knows best about a lot of issues, but you have to believe me when I tell you that you have more friends and more people who love and respect you than anyone else I know.”

“OK, I hope you’re right, because it’s really important to have friends,” he said, and then he drifted off to sleep.

I’ll never know if he fully believed me or otherwise realized the depth of the truth to what I said that night.  In something that I think we could only have seen in hindsight in our situation, I wish so much that we had encouraged any of Dad’s friends who were so inclined to visit while he was sick.  Being a true friend was one of the many things at which he excelled, and he needed to know beyond a shadow of a doubt that his friends were rooting for him as he fought, that the many people who cared about him were there for him in the shade as well as in the sunshine, and that those who knew him were changed for the better for having known him.

Up next ... Part 29 - A Slippery Slope

Part 25 - Round 2

Continued from Part 24

As indicated on the Dry Erase Board, I arrived at my parents’ house in time to accompany them to get Dad’s second round of chemo/Avastin.  I had called the oncologist’s office a few days before to request a consultation with a registered dietician with experience with cancer patients since Dad’s appetite had diminished to almost nothing, and so that was the first order of business on the day of Chemo: Round 2.  The nutritionist met us in the waiting room of the oncologist’s office, which I guess was nice because it was productive use of our time as we waited to see the doctor, but I kept hearing the sound of screeching tires in my head as every rule of confidentiality ever established in the field of medicine was broken by this open-air approach.  Dad didn’t care/didn’t notice, but Mom and I did, and we were torn between being grateful for the complimentary consultation and horrified at the dietician's lack of awareness of and regard to Dad’s right to privacy.

At one point in the conversation, she asked Dad if he was “regular.”  Unclear about her role even after an introduction and despite her name tag, Dad misinterpreted what she meant and said, “Sure!  I’m just a regular guy, nobody special.”  Mom and I exchanged a look and waited for Ms. Dietician to figure a way out of that one.  Perhaps thinking that he was kidding, she laughed and then said, “But really, how often are you able to go to the bathroom?”  Again, Dad missed the mark, and he said, “Oh I don’t know, they let me go whenever I need to, probably ten times a day or so, depending on how much Diet Coke and beer they let me drink.”  Ms. D started to tune in to the program at that point, I think, and finally she got more specific:  “How often do you have a bowel movement?”  Without missing a beat, Dad said, “Not nearly enough!  When I was running, I always went once a day, but that’s just one of those things that doesn’t come easy to me anymore.”  He didn’t realize the opaqueness of his statement, but luckily Ms. D picked up what he was putting down, and the conversation could (finally) move on.  

So, with that as the conversation opener, we got to discuss pooping right there in the waiting room.  Mom and I recapped the scene later when Dad wasn’t listening and agreed that – pun definitely intended here because sometimes you’ve just got to laugh – Dad didn’t give a shit that we were talking in a very crowded room about something that most people would consider very personal.  Ms. D proceeded to discuss the importance of getting plenty of fiber and “healthy fluids” (“I don’t guess that includes Diet Coke and beer,” Dad grumbled).  The specifics of the type of intake was much less concerning to me at that point than the amount, or lack thereof, was.  I had counted calories for Dad and let Ms. D know that he was consuming less than 500 per day.  

With that, she ushered us into the inner office, where more patients were waiting, lining the walls in chairs and wheelchairs, waiting to be seen in the lab, and instructed Dad to get up on the scale.  Unlike the scale at Duke, this one had grab bars on either side of it, but it still required stepping up on a platform, which Dad needed help with.  He was able to balance for a split second without holding onto the rails or to me, though (Microscopic Improvement??, I wondered), and Ms. D reported that he'd had a weight-loss of seven pounds since leaving rehab, fairly dramatic in an already-thin (Dad preferred to be described as “in shape” rather than thin) person.

With no treatment room open, she loaded us up right there in the hallway with free samples of calorie boosters - Ensure Plus and Boost Plus, which she said tasted like a milkshake, and Benecalorie, a flavorless caloric-dense supplement that could be added in to any soft food.  She also recommended that he switch to whole milk and whole milk products (yogurt, cheeses, etc.), to which Dad gave Mom and me a not-so-subtle eye roll.  (All my life I remember him saying that cheese makes people fat, and evidently he had not forgotten about and did not plan to change his stance on that.)  We heard Dad’s name being called to get him into the lab, and so we thanked Ms. D (“She was so nice!” Dad commented loudly as we pushed his wheelchair down the hallway) and forged ahead.  

Lab Tech took blood from Dad’s left arm, which he didn’t feel at all due to the continued sensation problems.  I thought she had thought the process through and figured it was kinder to stick the numb arm, especially since it took her a few tries to get the needle into his tricky steroid-abused vessel, but then I saw her hand the glass vile of blood to Dad in his left hand for him to hold while she turned to fill out his paperwork.  Dad could move his left arm and leg; he just couldn’t feel them, plus his attention span was, well, not great, and so within 30 seconds he started to relax his hand and I had to dive to catch the vile before it hit the ground.  “Uh-oh!  That was close!” Lab Tech said when she realized what had happened.  Hopefully she won’t make that mistake again.  

Next Dad had to give a urine sample, which was a challenge for the above mentioned reasons as well as the fact that he almost never remembered to lock the brakes on the wheels of his wheelchair, and so he needed verbal prompts through the bathroom door for safety so that he didn’t fall.  I got lots of odd looks from those in the area as I shouted through the closed bathroom door in the hallway, but Dad got the job done and delivered the goods with his right hand.  We moved into the exam room, where luckily we didn’t wait long before the oncologist’s handy-dandy nurse practitioner came in.  The oncologist himself was out of town at a conference that day (hopefully, I thought, learning all about treating GBM!).  

“The blood work looks good, weight is down but I understand you’ve meet with the dietician so let’s don’t worry about that for now,” NP said quickly.  “Any questions?”  Ummm, have we met?  

I had TONS of questions, starting with WHY THE HELL IS THIS HAPPENING and more recently WHY HAVEN’T WE SEEN ANY OF THAT MAGIC WE WERE PROMISED YET?  But I stayed focused on the list in the Notebook, the things that were most urgent and the quickest fixes, like again requesting an appointment with a neuropsychologist (“The only one we have is out through mid-January, but I’ll have the receptionist set you up for something then!”) and reminding her about the need for all lab reports to be faxed to Duke per the instructions of the protocol.  (“Will do!”)  I asked for refills on a couple of prescriptions and then worked my way to the steroid issue:  when could we start to decrease the steroids like the neuro-oncologists at Duke had recommended?  (“Because he’s still having those headaches, let me consult with our on-site oncologist and let you know while he’s getting the chemo.”)  Well, ok, then, let’s get the show on the road!

Onward to the chemo room.  Since Dad had gotten his first round of chemo/Avastin at Duke, it was our first time in this Chemo Suite, as it was ineptly called.  As soon as we walked in, I could tell the vibe was totally different here than at Duke.  The room was very crowded; in fact, Mom, Dad, and I had to stand huddled in a corner for about ten minutes just waiting on a chair to open up for him.  It was really noisy, which Dad hated, and there were no curtains or other dividers between the mauve chemo chairs at all, which I hated right away and knew that Dad would hate after a short while in that frenetic room.  In this not-so-sweet “suite,” the unsightly chairs were set up around a disorganized-looking circular-shaped nurses’ station in the center, like chairs around a campfire except nobody was singing or roasting marshmallows here.  In fact, everybody looked pretty miserable.

We took Dad over to his assigned chair and got him settled in.  There was a tiny “support person” chair to one side, so Mom sat there while I stood behind Dad’s recliner.  Thirty minutes later, we were still waiting, and so I got the attention of one of the rapidly-moving nurses and asked what the deal was.  “We’re still waiting on the doctor to order the meds for him,” she said.  Um, WHAT?  “He can’t order anything until after he’s seen the patient first.”  Well, assuming the Nurse Practitioner was the stand-in for the oncologist, Dad had already been seen, I told her.  We volleyed back and forth on this issue and she was very nice, but she had to make several phone calls and then type everything into her computer at the nurses’ station before the IV bags could be brought over, which took another 45 minutes, during which time Dad was getting restless.  Finally, the IV drip was started and Round 2 was on.  

Because we were so delayed in getting the chemo started, though, we were unsure if Mom would make it on time to a late afternoon appointment that she had.  I looked at Dad, who looked pretty relaxed by that time, and the single chair in the small space beside him, and I told Mom that I thought she should call my aunt for a ride home to get her car so that she could go to her appointment while Dad and I finished up.  Not only did there not seem to be a reason for both of us to stay while we waited for the drip to finish, but the logistics in the cramped Chemo Suite made it almost impossible for a patient to have more than one person waiting with him.

After Mom left, I got out my new iPad so I could show it to Dad for entertainment/distraction while we waited.  He had a hard time paying attention due to the high level of activity that was going on in the room - the alarms on the IV’s, the talking, the TV’s, the overhead announcements, and to top it off the Christmas muzak that was playing in the background.  I put the iPad away and tried to talk to him in a soothing voice about visualization of cancer cells being destroyed.  He wasn’t much buying that either.  A short while later, he announced that he had to go to the bathroom, and so I hustled him into his wheelchair, and a nurse pushed his IV pole along behind us to the private-stall restroom around the corner.  I got the wheels on the wheelchair locked and the IV pole situated so that it was out of his way and then stepped out of the bathroom to give him some privacy.  The nurse and I stood outside the door waiting.  Dad kept yelling to us that he was ok (“and don’t come it!” he said over and over), until finally I heard the clank of metal against metal and knew it was time to check things out.  He was perched awkwardly in the wheelchair and was trying to adjust the footrests but had the IV line completely wrapped around both of his legs.  By the time we got him untangled, Dad was frustrated, embarrassed, and very distressed.  Another patient was waiting to use the bathroom, and so the nurse and I got Dad out of there and started moving him and the IV pole back towards the Chemo Suite.  Right when we got him back into the mauve chair, he fell apart.  “This is taking too long!” he said.  “I was supposed to be out of here hours ago!  I am one of the ones in charge of a company, and I’ve got to get back this afternoon in time to do some work!”

All of that was true, except for the part about his needing to get back to work; that of course had not been on the schedule for the day.  He started reaching towards the tape that was securing the IV in his arm like he was going to rip out the line.  I didn’t know what to do, but I did know that we had to somehow get him calmed down so we could finish up and get the hell out of there.  The nurse was trying her best to help us; at one point she suggested that he try to watch TV, but when she used the remote control by his chair to change the channel, the TV went to a Spanish-speaking station, which made Dad even angrier and more upset.  He was just completely overwhelmed.   With the help of some warm blankets, the nurse and I finally got him calmed down, and thankfully a short time later the infusion was finished.  

We made it out to the car and loaded up for the ride home.  We had gotten there in the morning and hadn’t expected to be there for more than a few hours, and so Dad had not eaten since breakfast that day except for some snack foods they had in the Chemo Suite.   I wanted to get him home and then try to figure out supper, but, as I drove down the interstate in the dark towards my parents’ house, he insisted that we stop and pick up Chinese food on the way home.  “I know just the place!” he said, and I was so glad that he seemed to be getting past the day’s troubles.  

He told me which exit of the interstate to take and directed me through several turns, throwing out comments like “You’re going to love this place!” and “Your mom and I go here pretty often!” along the way.  After this went on for awhile, I realized that not only did I not know where we were going or exactly where we were, but neither did he.  He gradually started to realize the same thing, but he wasn’t one to throw in the towel that easily, and so he gave me more directives and kept saying “It’s probably just right around the corner” until we’d been around and around in circles for more than half an hour.  The biggest obstacle was that he couldn’t remember the name of the place, and yet he could not be dissuaded from wanting to go to this particular place.  “They know me there!” he insisted.  I didn’t want to tell him the jig was up; I didn’t want to underscore anymore than our day already had how different Dad’s life had become, and I knew he was hungry and tired and just wanted to end a shitty day on a good note.  I tried calling my mom and both of my aunts but didn’t get an answer from any of them; actually I’m not sure what anyone except possibly my mom could have done because Dad didn’t know the name of where we were trying to go.

Finally, feeling like I was completely letting him down, I told Dad we should just turn around and go back to the interstate.  I pulled into the parking lot of a shopping center AND THERE IT WAS!  Dad was so excited that he literally almost jumped out of the car.  “I told you!” he said when we saw the bright lights of the restaurant, and I left it at that.  We got the food to go and headed home to meet Mom and eat our well-deserved dinner.

Coming Soon ... Part 26 - Oh, $*#^&!