Friday, June 15, 2012

Being Present

One thing that I think I got better at during my dad’s illness was being present.  When I think back to when my children were very young and there was a lot of just being there to be done, I don’t see myself as having been good at it; so often when I should have been completely focused on the joy of motherhood, I remember feeling like I needed be taking care of something else – work, household duties, or whatever – instead of basking in the good fortune that had come to me because I was able to spend time with them.  I don’t think I was in the moment often enough back then, and, to be honest, it’s something with which I’ve often found myself struggling in many contexts over the years.

But when I was told of Dad’s diagnosis, even though I didn’t (couldn’t) believe the prognosis, I realized the preciousness of spending time with him, just in case.  When my family was told the grim statistics that were so caustically presented to us, immediately we were all reeling over the extreme vulnerability of the man we loved so much, and maybe even that of life in general.  From the time Dad was initially taken to the hospital by ambulance, in some distinct ways he seemed so different from the man he really was, but in other ways he was, well, just himself.  What Cancer didn’t take from him was his sense of humor, his kindness, his tenacity, his love for his family and friends, and maybe even his belief that things would turn out all right.

Throughout his battle with Cancer, at least some confusion was there for Dad, at times a good bit of it, but his brilliance was still there too.  As much as we wanted to protect him and to have as much time as possible with him, he worked even harder to protect us and to have as much time as possible with us, and I will always remember and respect the grand effort I am certain that took on his part.  

Over the many years that Dad was in peak physical condition, especially when he was marathon-ready, he was thin-statured.  His son-in-laws and some of his friends used to jokingly call him Skeletor and say that he looked like a POW.   (Dad took that as a compliment: “Less weight to carry on my run!” he said enthusiastically.)  But at the end of his life, Cancer actually made him a Prisoner of War – literally overnight, he couldn’t go where he wanted to go or do what he wanted to do.  Hell, he couldn’t even be left alone for one minute for fear that his “I can do it myself” attitude and the impulsiveness and disregard for safety that were handed down by the disease would land him in the floor.  Obviously, nothing and no one had been able to keep him safe from Cancer, and, the way we saw it, we’d be damned if we weren’t going to try our absolute best to keep him safe from everything else.

And that’s where being present became necessary, right from Day 1 of his illness.  That’s also were being present became a privilege for those of us who loved him so much; it was a crash course for me in priorities and in time management.  At first, as I sat with Dad and even while I helped him with the many things with which he needed help, my mind raced ahead and then behind and then ahead again.  If not for the fatigue that became so extreme and so pervasive for my mom, my sisters, and me during the ten weeks we cared for Dad, we would surely have not been able to fall asleep at all for the whirling and racing our minds were doing.  As it was, though, by the time Dad entered rehab just a few days after his brain surgery, being present was all I could do, and, as well, it was all I wanted to do.

Along the way, Dad seemed like he still had plenty of fight left in him, until he didn’t.  The world, in Dad’s eyes before Cancer, was a great place, full of fun things to do and people to interact with, full of adventure and dreams and things to look forward to.  We watched as Cancer and the four walls of the hospital, the rehab center, his house, and then the hospital again changed that over time, though, and as the light and the happiness started to leave his eyes.

People going through the kind of traumatic experience that my family was while Dad was sick are not always the easiest people with whom to interact, we knew that, and we did what we could to follow Dad’s lead and to be appreciative and patient.  Some of the nurses and techs we clicked with, and some of them we tolerated while we counted down the minutes until their shifts were over.  We weren’t ourselves; we were busy being present and taking care of Dad with every bit of intensity that we could muster, 24 hours a day.  Fear and anger and helplessness and sorrow and fatigue changed who we were; I think most of the people we knew were aware of that and realized that our world had been turned upside down and we were just muddling through.  

In the months since Dad went on ahead, I think I have lost a lot of the ability I had gained in being present.  My mind so often flashes back to scenes of Dad struggling or the faces of the people who didn’t help us and didn’t seem to care that we were failing in our efforts to save him.  It’s like a remote control gone haywire with a life of its own that's controlling my thoughts sometimes when I should be controlling them, so that I can pay attention and be present, especially when I am lucky enough to have time to spend with my family and friends; I cannot control those flashes or the distractibility and the emotions that come with them.  I am very appreciative of the times when I can focus, whether it is to concentrate on doing something that needs to be done or to take a breath and feel some positive emotions.  Oddly, sometimes when I catch myself feeling happy, I’m happy that I can be happy in that moment, but, as in a sky without a cloud in sight, it also makes me anxious and sad to know that there is a black cloud that out there that will inevitably come near again at some point in the future.

Being present more consistently has gone back on the list of goals that I have for myself, and I hope to achieve it one day soon so that I can more often bask in the good that is all around me, despite the fact that one of the best people in my life is no longer able to be present to enjoy it with me.

Wednesday, June 13, 2012

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?

Monday, June 11, 2012

Dreaming, Part 1

I think it is common in grief to have a change in sleep patterns; oftentimes I think those who are grieving require more sleep than usual, and just as often I would be willing to be that they end up having trouble sleeping.

Both of these things are definitely true for me, even this far out from my dad’s going on ahead.  The really ironic thing about it for me is that, unlike so many cases in which the person who is ill sleeps a lot, my dad hardly ever slept during the ten weeks he was sick.  After awhile, like my dad - my mom, my sisters, and I were desperate for a good night’s sleep, but, also like Dad, we just dealt with the non-sleep because, well, we had to.  

It would seem that, once I was without the struggle that was the cause of the sleeplessness, I would be able to sleep.  But now, I think the grief and maybe even the physical and emotional manifestations of the grief are the barriers, and so regular, quality sleep still evades me for the most part, even despite trying different sleep medicines and in spite of the time that has gone by since Dad's death.

Last night, I went to sleep easily but a couple of hours later entered into a dream so disturbing that I feel I have to get it out of my system to keep it from (hopefully) haunting me or recurring.  In the dream, my whole extended family was in a van, driving across a bridge that went over a big river.  We were talking about how we should hurry and get home because Dad was supposed to meet us there and we knew he wouldn’t be late.  As we drove further across the bridge, we looked out the window and saw Dad, dressed in running clothes, running across on the shoulder of the bridge in the opposite direction.  He looked tan and healthy and happy, like he was on a mission but thoroughly enjoying himself.  He was running into the sun, and he didn’t see us as we passed by on the opposite side of the road.  Others in the van said that he would probably run to the other side of the bridge and then turn around and come back so that he could still meet us at home, but I argued and pleaded for the van to be turned around so that we could catch up to him and bring him back with us. “Something’s wrong!” I kept yelling.  “He’s never late and so I can’t understand why he’s running the wrong way!”  but we kept driving. After we got back to the house, I checked the phone to see if he had left us a message that would give us an idea about what he was doing since he wasn't where he was supposed to be, but the phone wasn’t working.  I decided to go up in the attic and check the phone line, and, when I did so, I discovered some loose wires sticking out.  I was desperate to repair the line so that Dad could contact us, but when I tucked the loose wires back inside the sheath of the cable, I was jolted by a shock so severe that I was thrown to the floor and couldn’t speak or move.  Over and over, I tried to make noise so that someone downstairs would hear me and help me.  All I could do was whimper quietly as I lied there in the floor; I was devastated by the knowledge that I couldn’t help Dad, and I was overcome by a sense of utter helplessness.  

At this point in the dream, my husband woke me up. “You’re dreaming,” he said.  Tears were running down my face, and it took me a couple of minutes to believe I wasn’t still lying paralyzed on the attic floor.

I think dreams are the mind’s way of helping a person to process things that have happened.  It isn’t hard to see the symbolism in the dream I had last night, from wanting to turn the van around to pick him up to wanting desperately to have a way to communicate with him.  Am I processing; am I breaking through some of the grief?  I can only hope.