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, $*#^&!

Part 15 - The Bubble

Continued from Part 14

In this month in 1976, a Movie of the Week called “The Boy In The Plastic Bubble” debuted. This is going to date me – but here goes:  I remember watching that movie and being fascinated by the interaction of John Travolta’s character Todd and his parents and the fact that the movie was based on a true story.  It was about a boy who is born with no immune system and thus has to live his entire life inside a plastic room, a “bubble” in which everything has been sterilized and through the wall of which he sees the world while he remains protected.  

During the whole time that Dad was sick, my family and I created a kind of Bubble around Dad; it was sometimes a place where we were struggling, but sometimes it was a comforting place too.  We needed The Bubble in part because we were worried about Dad's immune system, especially after he had started chemo, but we had other reasons for it too.  We felt we needed to close ranks to protect Dad from everything - from Cancer and from having to worry about anything on The Outside.  Fighting this thing was a 24-7 job for all of us, and we needed The Bubble around us to keep us focused, to keep our eyes on the goal which was to get Dad better.


As far as I could tell, Dad liked us to be there in the Bubble with him; at one point he said, “One good thing about being sick is that I get to see my kids and grandkids much more often!”  We tried to make life as good as it could be for Dad for the time being in The Bubble; we talked to him a lot about things that we had planned and that we thought he would enjoy after he got out of rehab; two big things he wanted to do were to go to Barnes & Noble and to the movies.  Put those on the Revised Bucket List – check!  Dad was very excited about seeing his two dogs and, of course, about getting Foster the Cat as soon as he got home.  For entertainment in the meantime, we set him up with a portable DVD player in the rehab hospital, but his attention span was way too short for him to care about watching movies or even TV shows.  At night, when he was trying to go to sleep, he often said he wanted to watch TV, but after it had been on for only a minute or two he would change the channel or just turn the TV off.  My mom’s friend brought their greyhound Buddy for an extra visit, and Dad seemed to enjoy sitting with him in the sun in the courtyard of the rehab facility one afternoon.  It was all relative, though, and we were just marking time until Dad could get out of there and, even more importantly, until he was feeling better.

Dad with Buddy at the rehab facility

The daily therapy sessions continued; we tried to cheer Dad on and to point out even the slightest improvement in skill level, but he was nonplussed and non-impressed with his own progress.  “Big deal!” he said angrily after the P.T. told him that he had done a good job with his leg exercises that afternoon.  “A few weeks ago I could run 20 miles and not even be tired.”  It’s hard to argue with that.  

I’ve seen lots of things written about something called “Helicopter Parenting,” when a child’s parents are overly involved in everything going on in the child’s life, so much so that the child never learns how to fight his own battles or to become self-sufficient.  This was different, though, it was necessary for all of us to Helicopter around Dad to care for him, to ensure his safety, to get him the medical attention he needed, and – last but not least – so that we could just be together, in case on one not-too-far-off day we couldn’t.  

Dad, wearing his "Healing Hat" that his sister sent him after his surgery

Something that someone told me early on in my Dad’s illness was that each person in the family would probably deal with the crisis in a different way; as my friend pointed out, our roles in the family and our personalities had long since been established, and having a crisis to deal with wasn’t about to change that.  Something else I learned along the way was that we all had to take turns being The Strong One; being the Big Sister didn’t have anything to do with age – we all took turns being the Leader, the Captain, the Positive One, and, as well,  we all took turns in despair.

The Bubble was by invitation only, and it was an exclusive affair.  There was only so much room and so much oxygen in The Bubble.  Even close friends and extended family members had to watch us from outside.  I’m sure some of them felt like we were poor communicators or selfish or whatever, but we couldn’t worry about that then and I can’t worry about it now.  We did what we needed to do, and I am not for one second sorry about that.  We put all of our energy into doing whatever it took to take care of Dad.  Being with him was hard work a lot of the time; there was no reading a magazine or surfing the Internet when we were with Dad.  The neurological damage left him with no regard for safety, and, not to belabor a point, but, simply put, he didn’t sleep.  Almost at all.

It was hard NOT to think about Cancer and to be alarmed and afraid about the future around him, although, at least for me, being away from him was much, much worse.  I needed to be with him as much as I could arrange, not for his sake or for my family’s but for my own.  I loved talking to him, even when he was somewhat confused or forgetful; some of the things he said were so inspirational, some were very touching, some were heartbreaking, and others were just everyday kinds of conversational things, but I loved them all the same.  I couldn’t bear to let myself imagine how it would be if things didn’t go our way; I was convinced that we would beat the odds, however we had to go about doing it.  There in that Bubble, we were so exhausted, and scared, and desperate, but we were in this thing together and that’s what we thought counted.  

Up Next ... Part 16 - Holding On

Part 8 - Safety First

Continued from Part 7

Just after Dad was moved to a room on the neuro floor, reinforcements arrived; my husband and my daughters, my youngest sister’s husband, and my brother joined us, a welcome distraction for Dad and much-needed support for my mom, my sisters, and me. 

The first order of business in the new room per Dad’s request was getting his face shaved.  Due to the lingering problems with sensation and strength in his left arm and hand (his dominant), Dad needed help shaving, and my brother-in-law volunteered for the job.  “I feel better already!” Dad exclaimed when they were done.  He wanted his head shaved too, but we reminded him that the surgeon had said the incision couldn’t get wet yet so that part had to wait. 

“I think I’m finally tired of watching football,” he commented later that day.  He was an Auburn University graduate and a fan of their football team, and so we thought he would enjoy watching the game on TV that afternoon.  His attention span and his energy level were not up-to-par, though; he couldn’t handle watching TV or even having a conversation for more than a few minutes at a time.  He repeatedly requested that Mom bring his cell phone and/or his laptop to him at the hospital; at one point he even said, “She keeps hiding it from me so I won’t do work.”  We pointed out to him that he had just had brain surgery a few days before, but he was unwavering in his campaign to get possession of especially the cell phone back.

  

Full disclosure:  we weren’t just worried that Dad might overtax himself if he was given his cell phone and/or his laptop. We wanted to protect the brokerage company for which he worked, his clients, and most especially him because we knew that his memory, reasoning, and impulse control were skewed.  We couldn’t tell him that, though, and he wasn't able to realize it himself, but as a result he was frustrated and sometimes angry about the lack of access and independence.

As an occupational therapist, I started asking about Dad getting OT and PT right after his surgery, and the Pass the Buck/Wait and See Game continued.  First we were told he would get therapy when we got to a regular floor instead of the ICU.  Then we were told they “don’t do therapy on the weekend (even though he was moved to the regular room in the early afternoon on Friday).  Evidently, the doctors weren’t aware of this policy because when the physician’s assistant for the neurosurgeon (a different one from the one who gave me a fake non-working cell phone number the night before the surgery) came to visit on Saturday, he asked how P.T. was going and was surprised when we said it wasn’t.  About an hour later, OT and PT showed up.  They had Dad sit up on the side of the bed and use the walker to get around the room a little (he was unsteady during both of these tasks) and checked his movement and strength (fine on the right, not good on the left).  **Side note:  Dad wasn't really discouraged or bothered by his newly incurred "issues" or the fact that he had gone from being Ironman-ready to needing help walking in less than a week, which speaks very loudly to the point that there was as much of a cognitive deficit present as there was a physical one.**  The therapists let us know right away that they recommended a short stay in an inpatient rehab hospital and that they thought we should go and visit a few in the area right away since the doctors were already talking about discharge in a couple of days. 

Dad wanted to go home, and we wanted him to be able to, but the more we watched him struggle with the physical aspects of tasks and – even more to the point – the cognitive aspects, particularly the safety precautions and his own limitations despite repeated warnings from the staff and from us, the more we became convinced that it wouldn’t be safe to take him home yet.  We considered taking him home and setting up the therapies on an outpatient basis, but we were told that outpatient rehab would take place two or three times per week at the most, and of course it would require someone to load him in the car and drive him to and from a therapy facility.  (The logistics of the latter were more extensive than I feel like I can clearly explain.  Let's just say that Dad's impulsiveness and his "I can do it myself" attitude were not a good combo.)  Obviously, we thought, the more therapy he gets in the acute phase of recovery, the more quickly he will regain function, and so we changed our focus from taking him home to finding the best inpatient rehab facility in the city.

That Sunday, on Halloween Day, we toured two rehab facilities.  (We considered a third but it was part of a nursing home, and we knew that would be too hard of a blow to Dad, and - truth be told, although I am sure this was not part of our thought process at the time - on us.  I kept picturing us driving up to the nursing home/rehab facility with Dad in the car and hearing him say "What the hell? Are we looking for another nursing home for my mom?")

The first rehab facility we toured was near the hospital where Dad was; there seemed to be lots of patients there who were fairly young and who had a military background, which we thought Dad would prefer more than geriatric stroke patients, but this place had strict visiting hours for family which did not include overnight stays.  Basically, they didn't allow anybody but the patient to be there during any unstructured time - the time that was exactly when Dad wasn't safe when left by himself.  ("What the hell??" indeed!)  They said they wanted the patients to rest and/or to work on doing things for themselves during that time, which sounds great unless someone has had a series of traumatic brain insults like Dad had (the tumor, the lack of oxygen when he stopped breathing during the MRI, and the surgery).  Other than proposing the use of a "bed alarm" which would be set to sound at the nurses' station if (when) Dad got up by himself when he wasn't supposed to, they could not give us a plan for how they would keep him safe since he persistently tried to get out of bed and walk around without the walker and without paying attention to safety rules.  The bed alarm was not nearly adequate; he could easily have been up and in the floor with his only-partially healed skull/brain knocked against the floor by the time someone heard the alarm and checked on him.  The lack of plan, and our concerns about his safety, very obviously, were a total deal breaker.

The second place on our list was about 15 minutes further away from my parents’ house and was a rehab floor in a hospital; our reinforcements had to leave at that point and so Mom stayed at the hospital with Dad while my youngest sister and I continued the reconnaissance.  (The hospital where Dad was didn’t offer rehab stays - once the patient was "medically stable," he was to be discharged.)  This second place seemed to be well organized, and, when we spoke with the admissions coordinator and told him we were seeking a very short-term stay with aggressive therapy services, he said that could be arranged and that family could be with him 24/7.  Done.

We returned to the hospital and told Mom about our findings, and then she told Dad that she wanted him to go to rehab instead of going straight home to speed up his recovery.  He was onboard with the plan even though he really wanted to go home; he was highly motivated to “get back on track,” he said.

Next in our story … Part 9 – Going to Rehab