Monday, September 30, 2013

Whiz Quiz

Whiz Quiz

              At six months into my initial treatment, it was incumbent upon my hematologist to send me to the Multiple Myeloma Department at the John Theurer Cancer Center in Hackensack, NJ, for a consultation about stem cell transplant.  After our consultation with Dr. S., Craig and I were reporting back to Dr. K. our experience with the specialist, which had left us in shock, frankly.  In the middle of our indoctrination in Stem Cell Transplant, Dr. S. suddenly informed us that remission from drug therapy was “no longer a goal.” 
!
The blood test taken a week before our consultation revealed that my IgG protein was climbing, and Dr. S. advised that I needed the transplant.  We had not expected to hear that, since up until then, I had been doing quite well with my drug therapy.  So, Craig and I were both pretty much puddles of jelly upon being told it was no longer working.

            Skipping to another topic, Dr. S. was interested in knowing if, six–and–a–half months earlier, I had “frothy” urine.  Still in a semi–catatonic state, I told him I didn’t know. Well, he looked at me like I had six heads, and asked again, “You don’t remember?!”  I shook my head, “No.” 

         After I repeated that conversation to Dr. K., he looked at Craig and said, “That’s the difference between men and women— we like to make bubbles.”

            That has to be the funniest thing I ever heard a doctor say.

Women Need Pockets, Too!

Women Need Pockets, Too!

 
            Revlimid, while a Godsend for Multiple Myeloma sufferers, is a controlled substance derived from Thalidomide.  Naturally, the procedure for ordering and receiving the drug is serious business.
            First, my doctor’s office had to fulfill its clerical obligations in order to receive authorization from the both the manufacturer and my insurance company.  Once they were received, the ball was in the Specialty Pharmacy’s court.  But in the beginning, I wound up calling the pharmacy myself every month, trying to complete the circuit to find out why my drug hadn’t yet been shipped.
            Revlimid is taken for 21 days, with 7 days off.  Just preceding those final 7 days, the order would be placed for the next month’s supply, and if I hadn’t heard from the pharmacy by Wednesday, I would begin my panic calling.  I absolutely had to begin the next 28–day cycle on that Friday. 
            I would inevitably be at work, and having called the specialty pharmacy, would be trying to stay busy with work, while anxiously awaiting a call back.  Not daring to risk missing the life–saving call on this one particular day, and since I had no pockets or belt in my outfit, I tucked my clamshell cell phone into my bra.  
            Every twelve seconds I would glance at the clock, waiting for the call before the promised time.  But more than two hours passed, with no call.
            I did, however, receive a call on my work line that required my going into my (young) boss’s office to ask him about a discrepancy on our records.  I walked over to his desk, to show him the problem.
            When I was exactly next to him, my left boob started playing “Hazy Shade of Winter”!!  He laughed; I yelped; and we each leapt away from each other about a foot.  I hunched over and slunk away, muttering, “Oh, that’s my drug.”
            Of course, by this time, the phone was sweat––plastered against my breast, so I had to reach in and break the suction.
            It’s just my opinion, but I think ladies’ clothiers should be required to put either pockets or a belt on their products.  Just sayin’.

Saturday, September 28, 2013

The Wayward Medical Student

The Wayward Medical Student

 

            Taking Decadron (steroids) every Friday was a nightmare.  I started out taking ten every Friday, but was reduced to 7 12 after two or three months.  Emotionally and mentally, I was not normal, and I occasionally did some crying about it.  Friday nights I would get about 4 hours of sleep, even after taking Ambien; Saturday night was about the same.  I would run around on Saturday and most of Sunday, cleaning, organizing closets, throwing out and recycling tons of stuff.    Of course, nowadays I sometimes find myself looking for something, and after tearing the house apart, remembering I was once on drugs, eventually realize I probably got rid of whatever it is I am missing.
            Each Sunday night I would try to stop working, but I couldn’t really get myself to relax.  I found myself reaching for the ironing board…and my husband’s shirts.  My thoughts went back to when I was a child, and my mother’s ironing.  She would set up the board in the living room, and there would be shirts hanging from the “floating” staircase we had in our house.  I remembered the smell of the heat on the cotton clothing and sheets; I remembered learning to iron; and I remembered my mother saying that she enjoyed pressing clothes.  So, my “cool down” exercise each Sunday night became an hour or two of ironing. 
            But after one week of drug therapy, I noticed my thinking was not orderly, and I was upset about it.  After Dr. K’s agreeing with my assessment that the effects of the steroids appeared to be intensifying a little more each weekend, he told me a story of a fellow medical student, who lived with him in the same building.  He was taking steroids for some reason, and the police brought him home one night because he was wandering around in his underwear!
            I imagine my face was a gaping, horrified indication that that story was the wrong thing to tell me at that particular moment!  “How reassuring,” I muttered.  Dr. K. quickly added that the dosage was higher in those days. 
            All I could think was:  “I have always had a niggling fear that I would walk outdoors in my sleep…and I live on The Boulevard!”

April Fools Day

April Fools Day


            In the fall of 2008, our family joined the Calamity–of–the–Month Club, bringing us all a bit closer together.  In August, my daughter, Casey, tearfully announced to us that her marriage was ending.  We all mourned it because we loved our son–in–law, and all of us thought the two of them well–matched.
            At the end of September, our other daughter, Carrie, discovered she had a liver full of tumors, most likely benign adenomas or Focal Nodular Hyperplasia.  The adenomas would be a bigger concern, since they can change into cancer later on.  Focal Nodular Hyperplasia is harmless and left alone.
            Carrie had a biopsy, and a week later, went back to the surgeon to hear which of the above diagnoses she had.  After she left his office, she wound up at my front door, crying.  He told her she had a “well–behaved” liver cancer.  The good news was that, once the tumors were removed, she would not have cancer anymore.  The bad news was that, once the tumors were removed, there would not be enough liver remaining to sustain her life.  She would need a liver transplant.
            For four days we all anguished over Carrie’s prospects.  Casey was already mentally putting herself on the other operating table to donate part of her liver to Carrie, and I imagined both my daughters in the operating room.  Then, Carrie received a call from her surgeon, who happily proclaimed that, after having sent specimens to the Armed Forces Institute of Pathology, her tumors were Focal Nodular Hyperplasia.  That was when I discovered what nervous exhaustion must be; the next day, Saturday, I could barely get out of bed.  I had a hair appointment, and a nail appointment, and I didn’t know if I had the strength to keep either one.  I imagined what it must be like to have a gun pointed at your head, and then to only hear a click.
            In November, I finally got to keep my appointment with a new (to me) gynecologist.  I had to cancel the September appointment because I got my period; she had canceled the rescheduled October date because she was sick. 
            The visit was uneventful, except that I told her I had, in addition to my regular period (every 23 or 24 days…at Age 58, for crying out loud!) six days of unexplained bleeding.  That worried her, and despite my protestations that it was purely stress from all of our trials, she was unmoved.  She told me that if she did not do an endometrial biopsy, and pooh–poohed it, sending me away, and six months later I turned out to have cancer, then she had done me no service.  Of course, she was right, and the biopsy was scheduled for December.  A few days later, she called my cell phone to tell me I was anemic, that my hemoglobin was 9.9.  That meant absolutely nothing to me, since I had no idea what that number meant, and I thought anemia was not a big deal…especially with the amount of bleeding I was doing.  She told me to take iron, so I took iron.
            Now, I’m not usually pessimistic about things, but suddenly I just knew I had cancer.  I had lost ten pounds between August and November that I hadn’t been trying to lose.  I could make the argument that I was eating less, but I still had a conscience about it.  
          November 20 I turned 58, and my daughters, taking a cue from our occasional references to the Twilight phenomenon, bought me the four books of The Twilight Saga.  I must have been the 90 zillionth female to become captivated and addicted to the story.  I read the set in record time, and then started re–reading them.  Those books took me away from all my worry and stress.  I would turn to my precious husband, Craig, and say, “I have to be with Edward now,” and I would leave the room to read.  He was mildly amused.
            At some point in my reading I told Craig that he is truly my Edward.  He has a perfectly beautiful face, is intelligent and selfless, and completely devoted to ensuring my safety and happiness.  There is another parallel:  Craig and I met in our junior year of high school, just as Edward and Bella had. 
            The endometrial biopsy on December 1 came back normal, and I had my last period on December 8, 2008.
            New Year’s Eve couldn’t find two happier people than Craig and me.  We had escaped 2008, down one son­–in–law, but otherwise unscathed.  Everyone was healthy, and that was all that mattered.  We were very happy, indeed.
            In February, I called my gynecologist and told her, “I think you scared it out of me!”  She laughed and said, “Good!  Come in and I will take a blood test to check your hormone level.”  I went in February 26.  A few days later, she called my cell phone again, and told me my hemoglobin was down further: 9.3.  Now she had my attention.
            I went straight to my internist who asked me if I were a vegetarian, been taking any weird herbs, or had any weird viruses.  No, no and no.  He said it was possible I had some internal bleeding, so he prescribed Nexium and ordered a blood test, and a fecal coliform test for which the phlebotomist gave me a card.  Oh, goody…my favorite test.  Three days of trying to catch shit.  I was told the blood test results would be in within a couple of days.
            I forgot to call for the results until the next week, and when I did call, I was told that the doctor would have to call me back with the results.   I didn’t want to be a pain, so I let another week or more go by before I called again.  This time, the young woman on the other end looked into it, and came back with, “The doctor hasn’t signed off on the blood test yet, and the other test is special, and it takes a long time to come back.”   Oh...kay.
            At one–month–past–the–blood–test, I started having a meltdown and called the doctor’s office again.  I told the woman who answered the phone that it had been a month, and I needed to know what happened to my blood test.  Secretly, I dreaded having to take the other test again.  After putting me on hold briefly, she told me the phlebotomist was on the phone with the lab, and that she would call me back.  When the phlebotomist called me back, she told me the fecal coliform test was done in the wrong "container", and that it would have to be done again.  My voice started to rise, as I pronounced, “It was lost, wasn’t it?  It was lost!”  No, she said, it has to be done in a different container, and I needed to come in next Monday to get my kit and instructions.  And: “The doctor will have to call you with your blood test results,” to which I replied: “If anybody from your office calls me back, it will be a freakin’ miracle!”  And I hung up.
            The doctor called me back quickly.  “Donna,” he asked, “how are you?”  Now, of course I know he was really asking me how I was, but instead I gave him the chronological litany of complaints about the calls to his office.  He acknowledged he wasn’t happy about the snafu; my hemoglobin was 8.6.  Oh.
            He asked me if I had lost weight, and I got a little defensive about it.  I told him yes, but that I had been eating less.  I had absolutely no idea that was the only sign I would get that I was in big trouble.  The doctor asked me to come in for another blood test on Monday, since the results of the one he was holding were a month old.  I did so, and I made an appointment to come in to discuss my results on the following Wednesday.
            When the doctor came into the room, he quipped something about my coming in person this time for my results.  Then he said, “We’re not looking for internal bleeding anymore; it’s coming from your bone marrow. 
            He said something else, but I didn’t hear him; I was staring into the space he had just walked through, thinking, “What the Hell kind of thing is that to say?”  Then, I turned to him and asked why he thought it was coming from my bone marrow, and he simply replied, “Because you were taking iron and it didn’t help.”  Well, that was an evasive answer if ever I heard one!  He gave me the name of a hematologist, and told me, “He may want to do a bone marrow biopsy.”  Ya think?
            He also handed me the results of my blood tests to bring with me to the blood doctor.
            When I got home, I examined my lab reports for any clues I might be able to decipher.  I saw one line underlined, with an “Alert” for Serum Protein.  Didn’t look good, but I didn’t know what it meant.  Then I saw five lines on the bottom of the page, describing my red blood cells.  I Googled every term I didn’t understand, and I learned that some of my red cells were too large, some were too small (which just turned out to be a genetic anomaly), some were oval instead of round, they were pale, and some were malformed. Two diagnoses kept coming up on my computer screen:  Leukemia or Multiple Myeloma.  I turned to Craig, and I said, “I think I’m in trouble.”

            Dr. K saw us the very next night, examined me, took my history, and then met us in his office.  The first parts of the visit were ordinary enough, consisting of a patient history Q and A, following by a general physical once–over.  Then Craig and I sat in Dr. K’s office, where we were cautioned against doing too much Internet exploring.  I confessed, “I Googled; I Googled!  I looked up the terms at the bottom of the lab report describing my red cells.  And then I stopped.”  Then Dr. K told me not to read too much into my research.  Um, right, I will try to remember that.
            He said he would need a bone marrow biopsy…soon.  My ever–loving Craig piped up, “Like tonight?”  My head spun over to Craig so fast, you’d have thought I was auditioning for a part in “The Exorcist”.
            “Tonight?!!  Tonight?!! I squeaked.  As if the scene had been rehearsed, Dr. K rose from his desk and mused, “Hmmm.  Let’s ask Lidia.” 
“Lidia?  We are asking Lidia?” Not really knowing the significance of asking Lidia, but sensing I was screwed, whoever Lidia was, I went to the ladies’ room, seriously considering locking myself in.  When I got back, everything had been set up (thanks to Lidia confirming there were no other patients coming in that night…gee, thanks, Lidia.), and I was being assisted into a face–down position on the examining table.  Craig sat to my right, and I got a death grip on his hand.
            Dr. K explained he would be giving me a shot of Lidocaine to numb the skin, informing me it would sting a bit.  It was Craig’s answer to him that floored me:  “Don’t worry, she’s tough.”
            WHAT?!!!  WHAT?!!!”  I shrieked mentally.  “He’s trying to make the doctor feel better??”
            I spent the entire procedure as rigid as my politics, gripping Craig’s hand, although I had long since lost any sensation in my fingers, and desperately searching with my other hand for something to grip on the left side.  However, I immediately released the thing I found, when I realized it was a lever to raise the back of the examining table.  Oh, great…yeah, pull the lever and flip the upper part of my body into the “L” from Hell…and do who­–knows–what to the doctor’s heart rhythm. 
            Finally, the doctor stopped the boring motion and stepped over to a counter.  “Are we finished?” I begged.  “One moment,” he mumbled. Then he proclaimed, “We are finished.”
            Soon, they were sliding me backwards off the table and onto my feet, then back into a chair.  A paper cup of water was put into my hands, and then the shaking began.  The more I tried to calm myself, the worse the shaking got.
            I thought the ordeal took ten minutes, but Craig said it was probably five.  Then he drove me home and got me into bed.  Having held my body so rigidly for so long, I was exhausted. 
Then, I remembered, “If ever again a doctor has an oil derrick stuck in my backside, and you tell him, ‘Don’t worry, she’s tough,’ I will make the rest of your life a living Hell!”
            Six days later, I was called in for my diagnosis:  Multiple Myeloma.  Except for my Googling expedition, I had never heard of it.  Well, I always try to learn a new thing every day, and I sure got a lesson that night:  April Fool’s Day, 2009.