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 40 – Supposed to Be Better

Continued from Part 39

And so the New Deal was struck, the PICC line was placed, and – thankfully, I thought – our regular oncologist was scheduled to come back on duty after the long holiday weekend.  

The kids made posters and signs for Dad, which we taped all around his hospital room.  Our focus became encouragement, even more than before and even over medical intervention, and I believed that together we could WILL Dad to get better.

Making "We love you, Gramps!" signs

Overnight at that point, Dad’s emotions went from worry and sadness to anger to determination, with the latter aimed at eating.  Dad talked almost constantly about trying to eat, at one point even saying that he felt like his appetite would come back if he could just go out to eat. (Luckily, he acquiesced in that effort and agreed to eat some food that we got “to go” from a restaurant outside the hospital.)  The PICC-line was being used for blood draws and IV meds, but, when we asked when the supplemental feeding would begin, the night-shift nurse told us it wouldn’t be until later in the day at the earliest because a “nutritional support” consult had to be completed first, and she added that, if Dad continued to eat like he had been overnight, “the port probably wouldn’t be used for nutrition because it’s better for him to get calories by eating.”  

Right at 7 a.m., our regular oncologist came in to see Dad for his morning rounds, his first time to see Dad in four days. In what would become the second-to-most anger-inducing statement made around me by a medical staff member during the entire time Dad was sick (the first being said by the stand-in oncologist said on Christmas Day) , the oncologist jokingly said to Dad, “What happened? You were supposed to be better by now!”

Although I remember these words as if they had just been spoken, I don’t remember what I said back, if anything.  I do, however, recall what I WANTED to say:  “He was supposed to ‘get better’ from the surgery, from rehab, and from the Avastin!  We were supposed to be taking him to a Grizzlies game tonight instead of being here in the hospital.  We were supposed to have a memorable family celebration on Christmas at my parents’ house.  In fact, if we’re talking ‘what happened’s’ and ‘supposed to’s,’ he was supposed to live to be 100!”  There were so many things that were supposed to have been happening, but none of it was going according to plan, and at that point none of it even mattered; we just wanted the doctors to figure out how to get Dad feeling better.

After his opening statement, the oncologist looked at us sitting in the tiny, hard chairs around Dad’s bed in the freezing cold ICU room and said he wasn’t sure why Dad had been admitted to the unit in the first place.  He chortled at the surgical masks we were all wearing and said that, since Dad’s blood count was in the normal range even when he was admitted to the ICU, the neutropenic precautions hadn’t been necessary during any of the time we’d been there. 

With regards to the PICC line, he said, “That type of feeding will disturb blood sugar levels; it’s mostly sugar.”  I wanted to scream, WHY IN HELL ARE WE JUST NOW FINDING THIS OUT?  My blood pressure was rising by the second.  I so desperately wanted to keep liking this guy, I wanted to trust him, and I wanted him to come in and clean up the mess that I felt had been created in his absence.

The oncologist seemed to think that what had been being done while he wasn’t around was “overkill,” which of course pissed me off beyond belief.  (I don’t know if it made me madder to think that things weren’t handled correctly in his absence or just that he seemed to be second-guessing after his long holiday weekend.) He discontinued several medications and decreased a few others. He said he was adding a sleep medication and writing an order for anti-anxiety meds to be given as needed.  He said that he wanted Dad to go to a regular floor immediately, for his comfort and for ours and because he felt the ICU-environment “wasn’t working for him.”  (No shit, Sherlock!)  And then I asked him the question I knew Dad wanted me to ask the most:  “What’s it going to take for him to be able to go home?”  

“I want his blood pressure to be in a safe range, I want him to be getting up out of bed, and I want him to be eating regularly, and then I’ll discharge him.”  

“OK!” Dad said enthusiastically, as if all of that was easy.

At the time, I thought that the oncologist thought Dad was about to get better, and so I viewed these changes as a positive step in the right direction.  Looking back, though, I think at best the oncologist was short-sighted, under-informed, and/or thinking wishfully instead of really seeing Dad and his condition as they were; at worst the guy was throwing his hands up and had stopped seeing intensive intervention as being necessary or warranted.

By mid-morning, physical therapy had been ordered, the catheter had been removed, and Dad had been transferred back to the oncology floor.  I thought Dad would be encouraged, but he kept forgetting how much longer he had to be in the hospital and what had to happen before he could go home, and he was discouraged and disappointed each time he was told that he probably wouldn’t be able to go home for several more days.

Not long after we got to the new room, the Physical Therapist came in, and together she and I helped Dad sit up on the edge of the bed for six minutes, an effort that completely exhausted and dispirited him.  Following that, someone from Pharmacy came in and told us that TPN feeding would begin to be administered through the PICC line later that evening.  When I pressed her for details as to why it was going to have been more than 24 hours after the line had been placed before the supplemental nutrition would be started, she didn’t really answer the question but did enlighten us to the fact that, evidently as was standard for all patients who’d just gotten a PICC-line, Dad would be “started slowly” on the TPN feeding, at first getting 700 calories per day and then building up to a maximum of 1000 calories per 24 hours.  This was NOT what we had been led to believe before the line was placed.  We were told that the PICC line would provide an opportunity for much greater caloric intake.  I was enraged, but I gritted my teeth and stayed focused on Dad.  What was done was, well, done, and maybe, I reasoned, the extra calories that he could get that way would help him get strong enough to get the hell out of that place.

For the first several hours that we were in the new room, the nursing staff seemed to struggle to accommodate Dad’s needs.  Because it was still considered a “holiday week,” the regular oncology floor was shut down, and we were actually on the bone marrow transplant ward.  Apparently, the nurses on that floor weren’t at all used to patients with neuro-like problems; most of the other patients there were independently walking laps with their IV-poles trailing them, and some were even going back and forth between their rooms and the little patient kitchen to get snacks or ice for themselves.  

But we were floundering.  The removal of the catheter seemed like excellent news at first, but it soon became a source of great distress for Dad and for us.  Contrary to the oncologist’s apparent idea that Dad would regain his mobility and his strength as soon as he got out of the ICU, Dad, of course, was still bedbound.  In fact, he couldn’t even move himself at all in the bed, much less sit up or stand.  And thus maneuvering to use the bedpan or the urinal was difficult, to put it mildly (and, at that point, the idea of his using a bedside commode or getting up on a walker to make it to the toilet in the bathroom seemed like looking at the finish line of a marathon from the vantage point of mile one).

Humiliatingly and frustratingly to him, Dad had more than one mishap with the urinal.  We were ready to do whatever it took to help him, but at the same time we wanted to try to preserve whatever was left of his dignity.  When Dad’s sheets got wet the first time, I pushed the call button, and, when we hadn’t gotten a response more than 5 minutes later, I went out into the hall, found the nurse, and told her that Dad needed to have his sheets changed.  “They’re in the linen closet,” she told me with a wave in that general direction, as if that solved the problem.

Fortunately, at shift change we were once again blessed by the Nursing Assignment Fairy; this time the nurse that swooped in to support us was John.  Dad was still "giving it his all" to eat; when we clued John into the fact that we were very concerned about Dad’s caloric intake, John offered lots of “extras,” some of which Dad said “yes” to and then ate (including a Snickers bar).  Without even being asked, he brought extra blankets because Dad continued to say he was cold, and he provided extra pillows to prop Dad up so that he felt warmer and more secure.

My 16 year-old daughter and I stayed with Dad for the first shift that night; Dad chatted easily with her and even said, “If you can find some popcorn and a Diet Coke, I wouldn’t mind sharing it with you while we watch something on TV.”  With John’s help, she procured the snacks, and together they watched “American Chopper” and then a show about hair transplants while he quizzed her about her plans for college.  

Throughout his stay in the hospital this second time around, including the four days in the ICU, pain from the bed sore on his lower back had continued to plague Dad.  John was excellent at gently re-positioning Dad in different ways in the bed so that the pressure was taken off that area; he made an effort each time he came into the room to explain what he was doing and why to Dad and to us and even had me demonstrate my understanding of skills like propping Dad up with lots of pillows and rolled blankets.  He wasn’t just acting as a nurse; he was also a teacher and a friend.

About 9 p.m. that night, John came in to give Dad his night meds, which, without notice to us by the doctor, had been changed to include a psychiatric medication called Restoril.  While I wanted Dad to be able to sleep at night, I was very concerned about this choice of medication because I knew that it also affected the muscles and of course alertness and that it could also have several side effects for someone as sick as Dad was.  I was also angered that the orders had been changed without any type of discussion with the doctor.  It was just one more example of the mis-communication (or non-communication) and the half-assing that was going on WAY too often.

Dad swallowed that pill and his anti-seizure pills, and, shortly thereafter, he began to get groggy.  His voice got so soft that we had to lean in close to him to hear him; with tears in his eyes, he said he wanted to be sure that Mom knew how much he loved her and that he couldn’t make it without her.  He patted the space in the bed beside him – his sign for “I want someone to lie beside me” – and my daughter carefully hopped into the bed and tucked in next to him as he drifted off to sleep. About an hour later, my sister Jennifer and her husband arrived for their shift, and, without saying a word, Jennifer and my daughter seamlessly switches places without disturbing Dad.  There would be more sleeplessness, more anxiety, more struggles with the urinal, and more medicine that night for Dad, but at least he knew beyond a shadow of a doubt that his family was there with him and, despite what was going on with the medical staff or anything else, that that’s where we planned to stay.

Remembering the days in the ICU and then in that room on the BMT floor, I remember so well feeling so impotent to stop what was happening or to do anything that truly seemed to be helping Dad.  I am certain that the care at that hospital in general must be better than what we experienced, but, except for the few instances of competence and compassion from a few member of the nursing staff, it feels like Dad's care was awful from the moment he was wheeled into the ER.  Having worked in health care for so long, I know what can sometimes happen – arrogant doctors shuffle in and out, people just work their shifts and do the bare minimum, revolving staff members see patients (and their families) as a short time problem to endure.  It’s not right; it’s not fair.  But Dad had been caught in the crossfire just the same.  

Coming Soon ... Part 41 - The Turning Point

Part 36 - ICU 2.0

Continued from Part 35

After a day of ups and downs, the oncologist made his final rounds before the three-day holiday weekend late in the afternoon.  He delivered a pep talk to Dad, who as usual “faked” how he was feeling in front of the doctor (“Doing great, Doc!”), and then the doctor asked us to step out into the hall with him.  I tagged along, and my sister stayed in the room with Dad. 

“I’ve heard from the nurses that he’s mentioned dying a few times,” the oncologist said, “and I just want to be sure before I leave for the weekend that you want the chart to reflect that you want ‘heroic measures’ to be taken should anything drastic happen.”  

Wow, I thought, as I looked at my mom in shock.  OF COURSE we want HEROIC MEASURES, I thought; we want a MIRACLE - we want him to be healthy again!  We want someone to be a hero the way Dad is to us, and if that takes ‘heroic measures,’ then so be it!

“What do YOU think?” Mom asked the doctor.

“At this point, I think he is still recovering from the infection, and I expect him to respond to the treatment for that, after which we can press on with the treatment for the cancer,” he said.  “So I would say we do not want a DNR [Do Not Resuscitate order] in place at this point, but I want to be sure you agree.”

“Yes, we agree,” Mom told him.  “We need more time.”  

Exactly, I thought, and we said goodbye to the oncologist and went back into Dad’s room.  

That evening, the night nurse (unfortunately not Meredith, who had the night off) administered two units of whole blood to Dad; as per the protocol, she gave him IV Benedryl beforehand, and as a result Dad slept soundly for the first part of the transfusion.  After that, though, he was very restless and talkative, although most of what he said was “mumbly,“ as we noted in the Notebook.  He had just gotten back to sleep at 3:45 a.m. when a phlebotomist (whom I referred to in the Notebook at “The Blood Bitch”) burst into the room, abruptly flipped on the ceiling light, and announced loudly that she needed to take blood.  As Dad stirred in the bed, I jumped up, turned the lights back off, and told B.B. that, unless the order had been specifically written for blood to be drawn at that exact time, she needed to come back later.  She retreated and returned again at 7 a.m.

The rest of that day, which was Christmas Eve Day, was a whirlwind of activity, disappointment, and stress for us.  We had quite a string of visitors that morning, and Dad seemed to get more disoriented and more distressed with each person who entered the room.  Shortly after the nurses’ change of shift, the stand-in-oncologist Dr. M came in to introduce himself.  He said that Dad would be getting a transfusion of platelets that day and that he was increasing the insulin dosage due to the increasing blood sugar numbers that had been noted over the past 24 hours.  

Next was a visit from the Physical Therapist, who tried to help Dad turn onto his side in the bed.  It seemed like every movement was not only exhausting but also excruciatingly painful for him, and, after a couple of minutes of listening to and watching Dad groan and grimace in pain, she said, “I want to get him sitting up at the edge of the bed again, but I’m concerned that doing so will agitate him for several hours.”  Looking at the anguish on Dad’s face, Mom asked the P.T. to come back later, and the P.T. agreed to check back that afternoon.

Next through our revolving door was a volunteer with a therapy dog.  Like the rest of my family, Dad loved animals, but he seemed totally disinterested in interacting with this dog, even turning his head away when the volunteer asked if he wanted to pet the dog.  “Thank you anyway, but I really just want to see my own dogs and my cat,” he told her.  

Things continued to spiral downward, with Dad becoming more miserable and with his condition becoming more perilous as the day progressed.  When the nurse started to give Dad a sponge bath, he yelled, “I know you don’t mean to, but you’re really hurting me!  Can’t I please just skip this?”  A little while later, in preparation for the platelet transfusion, she brought in the Benedryl, and two minutes later Dad was snoozing, even sleeping through a shot of 15 units of insulin, which, due to the alarmingly high blood sugar reading, was much larger than the 6 units he had been getting.

Not long after the platelets had been administered, Dad’s blood pressure and blood sugar levels started climbing so rapidly that the decision was made by the stand-in oncologist to transfer him to the ICU.  “There’s just way too much going on with him,” the nurse commented, and, terrified, we agreed.  As the arrangements were being made for the transfer, Dad started hallucinating; he seemed less in pain and more confused and in his own world, which frightened us even more.

Because of the skeletal holiday staffing, the Neuro-ICU was closed, and Dad was assigned to the Cardiac-ICU, or the “CCU.”  When we got the word that we were moving, we hurriedly gathered up our belongings, and Mom pushed a cart with our stuff on it as I speed-walked alongside Dad in the bed, which was rolled down several long hallways by the nurse and a transport aide.  I was worried that the movement of the bed would hurt Dad, but instead he called out “Whee!” each time the bed was rolled across a bump on the floor along the way.  

As soon as we got to the little glassed-in room on the unit, Dad was taken back out for another CT scan ordered by the oncologist due of his worsening condition.  As per the results of the scan a few days before, again no signs of bleeding or inflammation in the brain were seen, which seemed like good news but - with the improvement of his blood count - instead left everyone wondering as to what was going on and what should be done next.  

Up next … Part 37 – The Fight 

Part 35 - Hanging On

Continued from Part 34

On the second day of Dad’s second hospitalization, Dad’s nose and cheeks looked red and swollen, but his neck was a little less swollen, his pain was better controlled, and he was coughing less with the medicine and breathing treatments he had received.  

When the oncologist came by for rounds that morning, he said that he expected “to see a neurological improvement as the infection started to clear,” which he expected would happen "soon, given the spectrum of antibiotics being administered."  He said that he was ordering an MRI for that afternoon and that we should plan for Dad to be in the hospital through the weekend, which meant we would be there on Christmas Day. 

We continued taking turns staying with Dad, with two of us there at a time. For most of the day, he was chatty, but, as my sister noted in the Notebook, his words were “mumbly,” presumably because of how weak he was and possibly linked to the pain medications being administered.  He had taken in very few calories over the past few days, but he kept saying that he wasn’t hungry and he got annoyed when one of us asked him if he would try to eat or drink something.

Late that afternoon after the MRI, he requested and finished off some chicken soup, some ice cream, and a Diet Coke, and a few hours later he ate some mashed potatoes and baked apples.  Each bite he ate gave me a little more hope that he would pull through the raging infection, of which we were still waiting to learn the source.  

Nurse Meredith, aka Angie, was with us again for the 7 p.m. to 7 a.m. night shift that second night.  She and Dad chatted about how much she liked her job and, when she told him that she was from Bowling Green, Kentucky, about how great Corvettes were.  When she commented that she thought he was doing much better than the night before, he nonchalantly said, “Yeah, I was supposed to die last night, but I didn’t so I know I am going to get better.”  We exchanged looks over his head and hoped silently that his prediction was correct.

Some Christmas carolers came by and stood in the hallway just outside the door to our room singing, which got a big smile from Dad.  By bedtime that night, he reported that he didn’t have any pain except for his throat and the bedsore hurting, the latter for which a special air mattress had been brought in for him.  

My sister J and I stayed with Dad that night.  Not long after we had turned the lights off in hopes that it would help him sleep, he got a really frightened look on his face and started gasping for breath.  His heart rate shot up; we called for Meredith, who sprinted down the hall to check on Dad but couldn’t figure out what was going on.  Over and over, Dad told us that he was freezing, and then he started saying things that we didn’t quite understand.  Despite the temperature of the room being warm and several blankets being placed over him in the bed, his teeth were chattering so much that we had to strain to understand him.  “I think I’m dead,” he told the three of us, “and I’m starting to wonder if y’all are dead too.”

We assured him that all of us including him were ok, but he insisted that the reason he was so cold was that he was dead and that he thought we were cold too since we were also dead.  “Is this what it’s like when you’re dead?” he asked. “I don’t want it to be cold!”

And then he said something even more puzzling:  “I see Hattie, Mattie, and little Sally over there – are they cold, too?” 

Wanting so much to help him, we looked at each other with wide, scared eyes.  The three of us were almost lying on top of him trying to warm him up and to calm him down.  After hearing him repeat the list of those three names a few times, it dawned on me that he was naming three dogs that had died years ago, and he was convinced that he could see them. Realizing that neither verbal nor physical comfort measures were not going to be effective in battling the panic and the terror, Meredith raced to get a sedative for Dad, and, five minutes later, he was resting soundly.  

Afterwards, Meredith went back to the nurses’ station, and my sister and I sat in the dark room and watched him sleep.  We didn’t know what to make of the episode or what had caused it to happen.  Dad slept for several hours, but we didn’t – the terror he had been experiencing had been transferred to us.

The oncologist made his rounds before the sun was up on Thursday morning; he brought with him the news that, although slightly improved, Dad’s blood counts were still dangerously low and thus he would be getting a transfusion later in the day.  Unlike his previous proclamation (which I had written down word-for-word in the Notebook) about Dad getting “exponentially better,” he said that recovery for Dad was going to be a roller-coaster ride, with improvements and regressions along the way, especially while we waited on the blood count to come back up.  

And then came the big news: the results of the previous day’s MRI.  Dr. O said that the tumor’s size was "about the same" as a month ago.  Given the extreme aggressiveness of the nature of GBM, that was considered to be very good news; the fact that the tumor hadn't grown was a sign that the treatment was working.  In even better news, fewer "areas of enhancement" had shown up on the MRI. which indicated there were fewer blood vessels going to (or "feeding") the tumor.   

“That is exactly the goal of Avastin,” Dr. O proclaimed, but then he went on to say that Dad would have to continue to stay in the hospital until his blood count improved and that it was too soon to predict the timing for the next dose of Avastin/chemo because that was dependent on the blood count.  He told us that he would be off-duty for the three-day holiday weekend but that another oncologist in his practice, Dr. M, would take over in his absence.  Dr. O listed his goals for Dad for over the long weekend as having an improved blood count, eating more, requiring less pain medication, and getting up in a chair.

“Just hold on until after the transfusion, and you’ll have more energy,” he said.  As he turned to leave the room, Dad, who was so exhausted that he had kept his eyes closed during the entire interaction, piped up with a cheery “Will do, Doc!  Thanks for coming by!”

Right after the doctor left, a physical therapist came by, and, with the help of a staff member named Dave whom my sister and I thought was a nurse, she and I helped Dad sit on the side of the bed, which was scary and totally exhausting for him.  Dad said he felt like he was going to fall, and, despite reassurances from all of us, he held on to our arms with a white-knuckled grip. Just moving from one position to another was a MAJOR effort for him, but, with his “no-pain-no-gain expression” on his face, he did it for about three minutes before he had to lie back on the bed to rest.  

When Meredith’s shift had ended at 7:00 that morning, a nurse named Leah had been assigned to Dad, but for some reason there was a change in staff late that morning.  Leah, although not warm or friendly like Meredith, had seemed efficient; the new nurse Jessica had started off acting just short of what I considered rude.  Of course, it was one thing for someone who was supposed to be taking care of Dad to be brusque with me, my sisters, or our mom, but it was an entirely different story when that impertinence was imposed on Dad.  

Helpful Dave brought ice chips, warm blankets, and Diet Coke for Dad throughout the morning.  Dad, of course, thanked Dave but didn’t notice Jessica’s bitchiness behavior, but we did, and, after several snippy comments from her and a few long delays in responding to fairly simple requests that directly related to the provision of patient care, I told the nursing supervisor that I didn’t think it was a good “match.”  

“We’re short staffed,” she informed me, as if that made the level of care acceptable.  

“What about Dave, the nurse who has been helping the other nurses all day?” I asked.

“Dave is our unit secretary,” she told me curtly.  “Really all I can do is for me myself to provide back up for Jessica as needed for the rest of this shift.”  Um, ok then.

Lunchtime brought some chicken soup for Dad, which he ate with assistance, and also a follow-up visit from the Infectious Disease doctor, who informed us that two “bugs” had been identified in Dad’s blood samples, both of which are typically found on the skin or in the mouth or digestive system of people but which, in a person like Dad with a compromised immune system, can go haywire and result in an infection anywhere in the body, most commonly in the lungs (pneumonia), in the urinary tract, in a wound, or in the throat.  The Infectious Disease doctor said that Dad could have infections in any or all of these and that the source was probably his own body.

Wow, I thought, we have put so much effort into sterilizing everything around him and limiting his contact with the outside world for fear that he would get sick, but the problem actually came from within his own body.  I wasn’t quite sure what to do with that information except to feel even more powerless against what was going on; despite our best efforts, the protective shield that I thought we had put up around him was eroding a little at a time.

Up Next … Part 36 – ICU 2.0