Waiting for Disaster

So much has been written about the stages of grief over the years.  It’s interesting to me, and I have found some comfort reading about generic Grief because the information sometimes serves at times to let me know what may be coming down the pike emotionally for me and at other times to reassure me that what I am feeling/thinking/doing is Normal (whatever Normal is). 

One of the many things that I did not know about before we were in the thick of things ourselves after my dad’s illness was Anticipatory Grief.  Somewhat ironically, I actually learned about it after we’d been launched into full-blown Grief after my dad’s death, but even in that context I was able to recognize the accuracy of what I was reading about it in terms of what my family went through while my dad was sick.

Something related to Grief that I haven’t heard anything about, though, is the watchdog mentality of a person who is caring for someone with a catastrophic illness, an emotional state that can even extend into the time period after the death of their loved one.  It’s an odd habit that can easily find footing, morphing into almost an addiction of sorts, the waiting for something bad to happen, the unwelcome sense of dread and fear, the impending sense of doom. That Waiting for Disaster kind of thinking makes sense when a person is caring for someone who is critically ill; what doesn’t add up, though, is when that feeling lasts even when the sick person isn’t around to need help anymore.

I don't think there's a term for that extended expectation of catastrophe; perhaps Foredoom is a good way to label it. From talking to so many people who have gone through similar situations like my family did after my dad's diagnosis, I can tell you that it's real - and that it's not that uncommon.

At times, when that Foredoom takes hold, it can feel almost shocking when things go well, and what’s even stranger than that is the way it feels disconcerting, maybe even reckless, to try to drop the Worst-Case Scenario kind of thinking, the sleeping with one eye open, the constant monitoring of the cell phone just in case someone needs me for something critical.  The thing about it that hooks us, I think, while we are caregivers in a critical situation, is the feeling of being needed, perhaps even in a life-or-death type of way, and of feeling like we have some control over things that without us, we imagine, would go spinning out of control. 

When that caregiver role is gone for us, it’s a loss that adds to the chaos, the directionlessness, and the grief of the loss of our loved one.  The sting of the realization that we did our best and still weren’t able to FIX things weighs so heavily on us and makes us wonder “What next?”  It makes us question whom we are, what we are supposed to be doing, and how we are going to cope with the changes that have been forced upon us.

Sometimes, I’m learning, that sense of vigilance remains, long after it makes sense.  Maybe we've become so accustomed to the noise that we don't know how to cope with the quiet. Maybe it’s our psyche’s way of punishing ourselves for not being able to save the person we loved - or for living still when he isn’t.  Maybe it’s a result of clinging on to the idea that we have any control over anything in life, even long after we should have realized how crazy and misdirected that thought is.  It’s like being “on call” was the thing that gave us direction and meaning, and, now that that’s gone, those of us still here are left adrift, unable to relax or unwind but so, so exhausted and confused and disoriented.

On Being Lazy

My dad never picked favorites - whenever he was asked to do so he would flat-out refuse.  He always said that designating a favorite would just make one seem better than another and that there was no point in that. -  After years of hearing him say that, I knew better than to ever ask him to pick a favorite of one over another, but once during one of our middle of the night talks while he was sick, I asked him what he thought the worst quality in a person is. His reply: being lazy. I had to laugh, because that made me think about when remote controls first came out on the market for TV's and he thought they were ridiculous. "It's lazy enough just sitting there watching TV," he'd said, "but I can't imagine why someone couldn't get up off the couch every once in awhile to change the channel or adjust the volume!!"  When he said being lazy was the worst trait a person could possess, though, just out of curiosity I asked him if he thought it was worse to be lazy than to be a liar or a thief. He thought for a minute and then, with a half-smile of his face and in a tone that left me wondering about whether or not he was kidding, he said, "Well, at least when a person does those things, he's putting some effort into it." 

He also commented a lot over the years about how crazy (and by that I think he meant lazy) he thought it was when someone would drive around a parking lot in search of the perfect parking spot rather than just parking in the first available place they encountered and walking.  It just wasn't something that he could make sense of, I guess, and he often pointed out that the people who do it at the gym are the worst! 

I think Dad's distaste for laziness - which he thought of as a lack of activity or a lack of effort - made it harder for him to tolerate his physical condition and the challenges that came along with it when he was sick.  I'm sure he didn't like having to be helped or having to wait for help doing things, and it didn't surprise anyone who knew him that he wanted a plan in place so he could "do something" every day to work towards getting better.  When his health declined instead of improving as we'd been told it would with the treatment, though, I started to notice that he didn't comment nearly as much about wanting to have goals for himself or about needing help to do basic things. It was as if he had somehow resigned himself to his condition. I thought at the time that maybe he was just biding his time until he could be independent again.  Now I wonder if he somehow saw letting us help him as trying to help us. 

One of These Days: The Other Side of the Curtain

Not too long ago, I went to the doctor for a physical.  Just a check-up.  Something we are supposed to take ourselves to do as Adults.  Blood pressure, hearing test, height/weight, blood work, mammogram, treadmill stress test, the works.   It went ok, as ok as those things go.  I can think of lots of things that are much more fun to do over a three-hour span of time, but it was good to have that check-up behind me, to feel like I was “good to go” for at least another year.

Except that maybe I wasn’t.  One week after my appointment, I pulled the car into the garage at the end of the workday, and, like I always do, I walked to the end of the driveway and checked the mailbox for mail.  Amidst the junk mail was an envelope with a return address of the place where I got the physical.  “Oh, good: results,” I thought.  An envelope, in my eyes, means good news, you’re fine, all clear.  I thought not-good results would warrant a phone call.  Silly me – wrong!

The form letter had three boxes that could be checked to indicate the results of the recent mammogram, like a stoplight with green, yellow, and red indicators.  My checkmark was next to the box for Caution; the comment by the ugly checkmark said, “Further testing is needed.”  Beside that a note was scrawled that read, “Abnormal findings. Call Jamie at number above.”  

And the best part:  it was, of course, after hours.   

The next morning, at 8:00 a.m. sharp, I dialed the number on the letter.  Busy.  I waited five minutes then repeated.  Again.  And again.  On about the tenth time, I got the front desk clerk and asked for Jamie.  The call was transferred, and it rolled over to voice mail.  I left a message and waited an hour then repeated.  Again.  And again.  

About an hour after I had left the third message, Jamie, who never told me what her position or her credentials were, called me back and said, “Uh, yeah, your scan last week didn’t look good to the radiologist so you need to have more testing.  I’ll call and try to get you in to the clinic we recommend, and then I’ll call you back and let you know when the appointment is.”  I stepped into the hallway of the school where I was working, and then I pressed her for more information about the scan, but she either didn’t know anything else or she didn’t care to tell me what it was.  She asked when it would be convenient for me to have the other tests ("Is something like that ever convenient??" I thought to myself), and I told her the sooner the better, that I’d really like to be seen that same day or the morning after at the latest.  I asked if I could call the clinic myself to schedule, but she said she had to do it because a radiologist’s orders are required.  She said it might be several hours or even the next day before she had a chance to call the clinic to see when they could fit me in.  I told her that I didn’t think I could wait that long.  “I know just how you feel,” she said.  

I couldn’t help it.  I know this kind of thing happens to other people every day, but it doesn’t happen to ME every day and I HATE being put in a position of – WHATEVER the position I was in was – vulnerability, fear, endangerment, at the mercy of, out of the loop.   Terrible.  

“Actually, you DON’T know how I feel,” I told her as I tried to hold back the terror and the fury I was feeling, “but I am asking you if you will just hurry up and get me the appointment as quickly as possible before I completely lose my grip, out of the kindness of your heart.”  

“We’re really busy here today,” she said, “and I have lots of patients.”

“Well, I don’t!” I replied, with dwindling restraint, my voice echoing down the school hallway. I was all out of patience for her, the radiologist, and the whole facility of people that seemed to think everyone who went through there was just a number on the page.  The fact that none of this is no big deal to any of the people on the other end of it kept flashing in neon lights inside my head.

“I’ll see what I can do,” she said tersely.  "Oh god, I hope I didn't just shoot myself in the foot by talking to her that way," I thought.  But what was I supposed to do - just freaking THANK HER for MAILING me really scary news that could potentially change my life and the lives of those around me, THANK HER for making me call so many times and leave so many messages pleading for her to call me back, THANK HER for being so damn casual about the whole thing, like it was an appointment to get my pants altered?

About an hour later, she called back to tell me the clinic would take me the following afternoon.  And thus began Phase II of the Waiting Game.

Actually, I think some of each are part of life!

Probably unfortunately and also probably weirdly, I know lots of facts about cancer.  (For some reason, this peculiar category of knowledge never comes up in a trivia contest.)  For example, I know that there are around 300,000 new cases of breast cancer diagnosed in this country every year and about 40,000 deaths from breast cancer in the U.S. annually.  I know that breast cancer is the second most common type of cancer among women (skin cancer gets first place) and that it is the second most deadly type of cancer in women (lung cancer is the most deadly).   The chance of a woman having breast cancer at some point in her life is around 1 in 8 in our country.  Fortunately, death rates from breast cancer are declining, but it’s terrifying stuff, especially when one has a family history of breast cancer like I do and especially when something “abnormal” has been identified on a mammogram.

I couldn't decide if I wished that the next appointment would hurry up and get there or if I wished it would never come.  When it did, I walked into the waiting room, and I signed in, sat down, and - you guessed it - waited.  The pounding in my ears as I waited was almost deafening.  After 30 minutes, I was called up to the registration area where the clerk took my insurance card.  When she told me the name of the physician to whom the results would be sent, I told her I’d never heard of that doctor before.  She said it was the radiologist from the other facility.  I asked her how this person whom I’d never met was going to follow-up with me, should some kind of follow-up be needed, and she looked at me as if I’d asked her how gravity works.  “I guess you can call him or her,” she said.  “How?  I don’t have his or her number! I don’t even know this person’s first name or if it’s a man or a woman!” I said.  “Well, I guess he or she will call you then,” she told me, obviously wishing I would just go away and be quiet.  Hmmmm.  I was trying to be nice; I know more flies are caught with honey, but I was so nervous, and I just wanted someone to be nice to me.  I wanted to feel like this clinic was handling things ever-so-competently.  I wanted this whole thing to be over with.  I asked her if she could also send the results to my primary care doctor and my gynecologist, both of whom I DO know and know how to make an appointment with.  “That’s not usually how it’s done,” she said, “but I guess we can do it.”  She gave me my insurance card back and told me to sit in Waiting Area #2.

After about 15 more minutes, I heard my name being called again.  A person (Nurse? Technician? Volunteer?  Escort?) introduced herself to me as Theresa and motioned for me to follow her.  She was very nice but didn’t tell me what her title or position was and that made me even more nervous.  (The more educated the person who escorts you back into the exam room is, the worse off you probably are, I was thinking.  I really hoped she isn’t a Radiologist or worse, a Surgeon.)   She led me to a dressing room with lots of lockers.  No one else was in there at the time, but I got the idea that even if they were, the procedure and the conversation would go exactly the same anyway.  It didn’t seem like the most private of venues, but I thought maybe that was good – I certainly didn’t want to go into the Room of Doom where they give bad news in private.  

Theresa told me that the official report they’d received said that there are two areas of concern on the left, changes since the previous scan the year before.  Standing there in the locker room, she asked me if I have children, if I breastfed them, and how old I was when I started my cycle.  Then she asked, “Have you ever had cancer before?” I felt bile rising in my throat, and I said, “Before when?  Do I have it now?”  (People often don’t realize how very literal of a person I am.)  She just half-laughed, and for some weird reason I laughed too, even though I didn’t think anything about anything that was happening around me was the least bit funny.  She told me to undress from the waist up and then to put on one of the robes on the shelf by the lockers.  "And then come sit in Waiting Room #3 around the corner until your name is called again.  And bring your purse with you just in case,” she said.  (“In case of what?” I thought.) She didn’t, however, tell me that if I have on deodorant I should wipe it off because it will obscure the view on the mammogram, which I knew she should have mentioned and which made me think she might have beeb forgetting to tell me something else I should really know.  

Undressed, uncomfortable, and even more tightly wound, I took a seat in Waiting Room #3 which was filled with women in robes.  The women all seemed older than me, but some didn’t seem that much older.  One woman reeked of cigarette smoke, and the smell permeated the room so much that I actually looked around to see if somebody was puffing away in the midst of all of this.  I overheadr one of the employees telling a fellow Robe Wearer that this waiting room is for “The Re-checks.”  At first, I thought she said “rejects,” which I considered protesting, but when I realized what she had actually said, I couldn’t argue so I just went on listening to the noise in my head.  I also couldn’t help thinking that they should really call this the Russian Roulette Room.  Statistically, some of us were probably going to get good news that day and some were more than likely going to get bad news.  I tried not to think too much about my Cancer Fact Bank.  I didn’t know the other women in there or their situations, but I didn’t want any one of us to be one of the 1 in 8.  We sat there together in Purgatory, each of us with no idea which way things are going to go that day, that year, or over the course of the rest of our lives.

After a few minutes, Theresa reappeared and took me into the mammogram room, where she showed me the films from last week, which were not very clear except for two black spots on the left amidst the gray and white background. I looked at the spots and felt the world start to melt away.  Or maybe I felt like I was melting; I’m not sure.  Theresa informed me that the scan I was looking at was radial, which didn’t really mean anything to me, especially given the fact that I was hyperventilating at the moment.  “Our machine is digital, which will show things much more clearly,” she said.  OH, ok, I thought, and I mentally tied a knot in the end of my emotional rope so I could try to hang on.

I’m pretty sure I didn’t want to see things more clearly, certainly not those two black spots ("Can’t I just wave a magic wand and have this whole thing go away?" I remember thinking), but I mutely followed her directions as she scanned my left breast from two views and then told me to come over to the computer.  I floated over and looked at the screen.  In my total-layman's opinion, I thought it looked good, nothing glaringly tumoresque, but then Theresa said, “They’re going to want to do an ultrasound on that area, too.”  

"Oh god why? That sounds bad!” I thought.  I floated on over to the ultrasound room.  The technician or whatever her title tried to make small talk about the upcoming weekend.  I hung in the conversation with her until I glanced over my shoulder at the screen and saw two black dots.  They looked like black marbles.  The melting thing started happening again, and this time there was some chest pain involved, and not from the wand that was going back and forth over the gel on my chest.

“Surely this chick is CPR certified, and they’ve probably got some of those paddles around here in case she needs to shock me back to life if I have a freaking heart attack,” I thought.  I decided I would hang onto my sanity long enough to direct them to stick the biggest needle they had into those black spots and suck them out or at least do whatever it took right then and there to find out definitively what they were.  And, if the results weren’t good, then I could drift off into the Deep End for a while if I still needed to. 

Ultrasound Girl went back and forth, side to side, with the wand, and now the small talk was over.  I was busy again listening to the sound of pounding in my head.  After a couple of minutes that seemed like a lot longer, one of the spots appeared on the screen again and I said, “What the hell IS that?”  I think it was only then that she realized I had been craning my neck so that I could watch the screen.  Maybe she thought I was asleep or meditating or just being really quiet for no reason before that question, but she picked right up on the terror in my voice once those words tumbled out.

“Looks like a cyst to me,” she said casually.  She threw out some factoids about normal fluctuations in hormone levels and transient cysts, took some more measurements of the black marbles on her screen, and then told me she was going to talk to the radiologist to see if he needed "anything else” and that she’d be back with my Results in a few minutes.  

After she left, I sat up on the table.  I considered looking through the drawers in the room to see if they had any huge needles or sedatives or anything else of interest but decided I’m wasn't sure if my legs would work if I tried to stand up right then.  One of the voices in my head said that the tech or whoever she was seemed upbeat, and then one of the other voices pointed out that she does this kind of thing every day and she probably had some acting classes as part of her training for cases just like this. 

And so I sat there, teetering on the edge, until she popped back in and said in a cheerleader voice, “All clear!  You get to go home with good news!”  She handed me a piece of paper that looked a lot like the one I’d gotten two days before in the mail, except this one had her clinic’s letterhead at the top and this time the box next to “Normal Findings” was checked.  I got dressed and went back through the maze of waiting rooms, and Life Marched On.

Do you have a false-alarm medical story?  If so, did the way you handled it surprise you, and do you think your initial thoughts and reaction were clues as to how you would handle a real crisis?  Did it help to give you perspective, or did it just make you even more uneasy about what could happen in the blink of an eye?

Part 26 - Oh, $*#^&!

Continued from Part 25

On the eve of Round 2 of Chemo for Dad, I thought he would sleep that night (every night we had some kind of new Plan or at least a theory of why that night would be THE NIGHT the sleeping would return), but the routine remained the same:  awake and talking until around 3 a.m., then headache, then pain meds, then more chatting, and finally snoozing around 5 a.m.  As part of my work responsibilities, I was scheduled to go to a conference about an hour away from my parents’ house the day after the appointment at the oncologist's office.  When it was time for me to leave, I went into my parents’ bedroom and saw Dad lying in bed with his eyes open. 

“I have to leave now to make it to the conference,” I told him. Dad had always tried to instill promptness and non-absenteeism in my sisters and me; he hated to take sick days and often said that he felt that sometimes people “let themselves off the hook way too easily” when it came to calling in sick to work.  But not on this day: in a moment I will never forget, he looked up at me and said ever so sadly, “Don’t go!  Just stay here with me!” 

I don’t know exactly why remembering this scene makes me cry every time I think of it.  Maybe it’s because he was asking for something so simple, and yet I thought to myself, “He doesn’t really mean that – he expects me to show up for work like I’m supposed to and like he’s always taught me to do.”  This time, I let myself off the hook way too easily by not calling in to say I wasn’t going to work, and I will always regret doing so that day.  I told him that he was scheduled to have therapy in the morning and then could relax in the afternoon, and he said "I'm planning to sleep with Foster all day!"

“No!” I said, alarmed and thinking that he was going to start refusing to participate in his therapy sessions or, worse, stop getting out of bed for any reason.  He laughed and said he was just kidding, and, with that, I hit the road.  

When I got to the conference, I was distracted and worried about Dad and Mom; I was definitely not the most attentive learner there that day.  In the middle of one of the sessions I was attending, I realized that we’d never gotten an answer from the nurse practitioner the day before about adjusting the steroid doseage, and so I stepped out of the meeting and put a call in to the oncologist’s office for clarification.  With my hand on my cell phone the whole time as I waited for a call back, I went to a few more sessions.  Finally, as the conference was winding up that day, my phone vibrated and I sprinted into the hallway to take the call.  Nurse practitioner said they wanted to keep Dad on the same dosage for now and would re-evaluate after the MRI scan in two more weeks.  

Fueled by frustration and concern, I left the conference center and drove back to Mom and Dad’s.  Dad was in the middle of a late-afternoon physical therapy session; they were working on figuring out the best way for him to get from the floor onto the couch, presumably in case he fell at some point.  Just like I had been at the conference, Dad was far from being fully invested; he was putting in some effort but obviously just wanted the session to end.   Like the majority of the therapy sessions he went through while he was sick, he tried his best and was a good sport, but he didn’t see the point of it and just wanted to get through it, so very unlike his pre-cancer workout tendencies.  After P.T. was over, Mom left to go run some errands, and Dad talked me into taking him to Sonic for a large Diet Coke.  As I drove along the winding two-lane road on our mission, I had the opportunity for “good memory hoarding” - Here’s that story, as I told it many months ago ... HOARDING MEMORIES

Large Diet Coke in hand, we made it home and sat at the kitchen table talking for awhile.  On a whim, I told Dad that I wanted to check something out:  I used the newspaper as a shield so that he couldn’t see his own arm, and then I tapped various locations on his arm and asked him to tell me when he felt me touching him.  Since before the surgery, Dad had not been able to discern when his left arm or hand was being touched; sometimes when he looked at it, he didn’t even think it was his.  But there at the kitchen table, as he casually sipped his Diet Coke, he was 100% accurate at indicating touch.  I was elated!  As soon as Mom got home, I showed her what he was able to do.  When we saw that he was able to do the same thing again and again, the two of us were cheering and almost crying we were so excited.

After several minutes of listening to us carry on, Dad said flatly, “I don’t see what the big deal is!”  I explained to him that this was a provable measure of improvement, a sign that the treatment was working.  “It’s a victory, a small one, but still a win,” I told him, “like winning your heat to qualify for the final in a track meet.”

“Well,” he said, without even a hint of the thrill we were experiencing, “I’ll wait to be excited when I can do everything I used to be able to do with this arm.”  Evidently, I would have to continue waiting for more evidence in my role as Microscopic Improvement Recognition Specialist.

Dad didn’t want to talk about minor improvements. He didn’t want food or visitors or phone calls or TV.  Except for those few minutes in our car ride that day, he didn’t want to listen to music, something else very unlike his pre-tumor self.  What he wanted, simply, was to sleep at night – and we were hanging our hats on the hope that would improve once the steroid dose was decreased - and to be able to poop.

That wasn’t what was going to get him better, obviously, but it was a big deal, something that interfered with his comfort and his routine on a daily basis while he was sick.  One of the side effects of several of the medicines that Dad was on was chronic constipation.  Dad contended that the bigger reason for his pressing issues, pun intended, was the lack of exercise that he was able to do.  He told every medical professional he saw – and a few other people as well, including woman who cleaned his room in the hospital when he first got sick, that he needed to take laxatives because if he couldn’t run, he wouldn’t be able “to go to the BATHROOM bathroom.”  

One of the side effects of another of the drugs he was taking, one of the two types of chemo on the protocol from the clinical trial, was diarrhea; in fact, we had been told by our first Chemo Nurse that it was so common with this medication, which was called Irinotecan, that oncology-staff members often referred to it as “I Run To The Can.”  

But Dad didn’t.  The chemo did its thing and then the appetite went.  Nothing was going in, so nothing was going out.  It became a weird, frequent conversation in our family.  We did what we could to increase his fiber and his fluid intake, but, for the most part, it was just one of the ongoing problems for which there was no viable solution, another point of suffering just to get through, something else to look forward to not having to deal with when the minor improvements became more, when my job as Microscopic Improvement Recognition Specialist finally paid off, as I fully expected it to do.  And so, as we had been, we settled in the best we could and we waited.

Coming soon ... Part 27 - A Few Good Days 

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, $*#^&!