Labels

Labels can be obnoxious, terrifying, and comforting. I use, as my example, my recent experiences in the health care industry. In order to get paid, a doctor must provide a diagnosis. The problem is, my diagnosis is still in flux. After three bone marrow biopsies and frequent blood samples, we still aren't entirely sure what's wrong, although we definitely agree that something IS wrong with me. But I'm finally becoming reconciled to some of the labels.

Initially, I was admitted to the tenth floor of the Lunder Building at Massachusetts General Hospital. Since I entered on a gurney, I never saw the label on the button in the elevator for the floor: Cancer. According to the official website, the tenth floor of the Lunder building was designed for “Medical Oncology” and specifically for bone marrow transplant patients. The hematologist at Cooley Dickinson Hospital in Northampton told me that he thought I had aplastic anemia, but that I would need a bone marrow biopsy to confirm this diagnosis. Nonetheless, this became my label.

The first person to mention cancer to me was a nurse, after I'd been a patient in Lunder 10 for several days. She told me that I had leukemia (until tests came back later that day – then my label changed again). At the time, I thought that aplastic anemia was “better” than cancer. It isn't. Many forms of cancer can be cured; aplastic anemia cannot.

I was discharged from Lunder 10 after my first bone marrow biopsy. It indicated that my blood was starting to regenerate, so I wouldn't be needing a transplant in the immediate future - days earlier, I had been planning to watch the July 4 fireworks from a window on the floor, as I had been told that I wasn't leaving without a transplant!  As I left, I still didn't have a diagnosis despite the suspicion that I had a B cell lymphoma. I was given an appointment for the hematology clinic, on the first floor of the Cox building at MGH.

A few days later, I returned to MGH. I was directed to the clinic, whose door was clearly marked with two different labels: “Bone Marrow Transplant Clinic” and “Leukemia Clinic.” Oh, dear. Neither of these was anything that I wanted to visit. Still, the receptionist was kind, constantly offering snacks, drinks, sandwiches, and candy to everyone who entered.

After I had made the trip in to Boston many times and had my visits cut from weekly to biweekly, to monthly, and ultimately to every other month, at some point, the labels on the door stopped intimidating me. I saw the same people in the waiting room. Some appeared to be getting better while others did not. But, I didn't see anyone like myself – everyone had a definite diagnosis and a treatment cycle. I was the odd one, getting repeatedly tested but never needing any infusions or transfusions.Maybe I could escape a label.

After the third bone marrow biopsy, my diagnosis was “finalized” as aplastic anemia. Although I continued to have symptoms suggestive of B cell lymphoma, I needed a formal diagnosis for my insurance. It had been five months since I first got sick and the only the thing that was certain is that my bone marrow had failed and was not rebounding to normal. Therefore, the only diagnosis possible was aplastic anemia. I wasn't happy but I understood the need for a label.

Then, just when we thought that I was in a stable place, things changed about two weeks after the appointment where my visits were cut to bimonthly in the second week November.

Just before Thanksgiving, I developed a new symptom – pain and numbness in my left jaw. I thought that the tooth that I cracked after Jack's ATF raid on my house – the one whose corner had separated about two years ago - had finally developed a cavity. I went to the dentist to have it x-rayed. There was nothing wrong with it. Dr. Archambault told me that sometimes, cardiac insufficiency caused left jaw pain and numbness, and that I needed to see my primary care physician immediately.

Dr. Rouzier didn't have any open slots, so I saw Dr. Maria Gallo. She had been my physical therapist before she went to medical school, so we already knew each other. I saw Dr. Rouzier in the corridor, and he told me to tell Maria that they should talk about my problem, whatever it was. And what it was, wasn't obvious.

Once again, I was an enigma. Maria ordered a special CT scan of my head to be done at Cooley Dickinson, to see if I might have an aneurysm pressing on the nerve. I walked out to my car and realized that I couldn't catch my breath - just like when my blood crashed in June. I went back in and asked for bloodwork. Maria agreed and sent me to the lab, where they drew blood. She called me later that evening, to tell me that my hematocrit was a bit lower than it had been for months and that she had talked to Dr. Rouzier. Maybe it was headed down, again. I would follow up with him the next day.

I remembered that when my blood was crashing back in June, I had intermittently suffered from an earache in my left ear without any ear infection. Maybe this was related as both areas are enervated by the same branch of the facial nerve. Or maybe not. I would have a larger battery of blood tests the next week, on the Monday after Thanksgiving, then another visit with Dr. Rouzier on Tuesday morning.

I wasn't feeling well all weekend. I wasn't feeling awful, but I thought that my hematocrit and platelets were dropping – I was really having a hard time catching my breath and I had bruises everywhere. I zipped up to UMass after teaching at HCC on Monday and got my blood drawn.

Practically as soon as I got home, I had a call from Dr. Rouzier. He had also left a message on my phone (I had forgotten to turn on the ringer after my class). My hematocrit was 23. My platelets were 63. My white count was as low as it had ever been. He had talked to Dr. Ballom to see what she thought. We agreed to meet Tuesday morning and make some decisions. Minimally, I needed a transfusion, but he thought I might be admitted for further testing.

Tuesday, Maripat drove me to MGH. Maripat recoiled when she saw the signs on the clinic door. I had forgotten about my visceral response, the first time I saw them. I had blood drawn for a type and cross-match and an IV installed. And we waited. And waited. And waited. I was interviewed by Dr. Ballom's new medical student, then she examined me. And we chatted about what to do next. We agreed that things had changed since our last meeting, and that I needed to have the CT scans that we had planned on scheduling in February or March as soon as possible.

No blood was forthcoming. I had apparently developed a lot of antibodies to proteins in other people's blood since the transfusions of June. Finally, I agreed to return the next day. I needed to teach a class at 1:30 PM on Wednesday, so we would have to start as early as possible.

I met John in the parking lot to Big Y at 5:30 AM. Traffic into Boston wasn't bad at 6:30, so we arrived at MGH at 7:00 AM, and got to the clinic before 7:15. John had to push me in a wheelchair as I knew that I wouldn't be able to walk that far. I directed him from building to building until we got there. He, too, wasn't pleased to see the sign on the door. I thought that he would prefer to eat, visit Padihershef the mummy, or even the medical museum, but he mostly stayed in the clinic waiting room, napping and looking at his ipad. I was surprised; he hates waiting rooms.

I had an IV installed and more bloodwork was done. The blood, promised for 7:30 AM, didn't arrive until 8:45. Then, my IV line perforated my vein, so my nurse had to install a new one in the other arm. She had to slow down the rate of flow, so the transfusion took a longer than expected. The second unit of blood was also late. We didn't leave until 12:30, two hours later than we had planned. But I was able to walk to the car in the parking lot. I didn't make it to my 1:30 class but I taught my 2:30.

I still have the label of “aplastic anemia.” I'm getting ready for a new label. The CT scans next week may locate a lymph node that has been turned against me. I think I want a new label, “lymphoma”. I think I'm ready for it, now. I'm not sure that my insurance company will appreciate a new label. It doesn't matter. I'm changing insurance at the end of the year!

Black Friday 2013 / Walmart Karma

      For the last dozen or so years, I've enjoyed the thrill of the hunt from shopping at the Black Friday sales. I plot my route, strike quickly, and rarely take more than a few hours to acquire all or nearly all of the objects of my desires. This year was a bit different, as I've been ill and I'm still pretty weak, at times.

     As usual, I went out early on Thanksgiving morning and bought the local newspaper, then scanned the ads, the only reason why I bought the paper! I had few needs this year. I plan to make most of the presents that I'll give but I needed a few items, myself, and the sales were the only way I could afford them.

     My television has had hard use this year, often running 24/7 while I was sick. I noticed a shady patch on it a few weeks ago and decided I'd better plan on replacing it before it entirely fails, which will certainly happen before next year's Black Friday sales! Lots of store had large televisions for sale, but I've made very little money this year and, as a consequence, I need to pinch every penny until it screams. I chose one for $97 at Walmart. I don't like to patronize Walmart but my choice was buying from them or not having a television at all as the next cheapest was in the $250 range. The other reason to buy this one was that they guaranteed that anyone who tried to buy one in the first hour that the store was open would get it before Christmas, even if they ran out of stock today. All of the other TVs everywhere else were limited to stock.

     When I was sick, a number of friends helped me by reorganizing my house and throwing out a lot of unnecessary stuff, but some important things got tossed, too, such as my old laptop bag (I had the laptop in the hospital). In the bag was my Livescribe pen and the portable drive that I use to back up the laptop. A backup is a necessity. I saw that Staples had a terabyte portable drive for $50, in my price range. I'll eventually replace the Livescribe pen, but not anytime soon.

     I had purchased a few things at Walmart last year and had no trouble getting in and out, about 15 minutes after the store opened, by giving the opening line enough time to wind its way in but before most people started to check out. I both checked my ad and online for my local store's opening time; Massachusetts is one of only three states that does not allow stores to open on Thanksgiving Day, so I wanted to arrive in a timely fashion. Walmart was supposed to open at midnight and Staples (just down the street) would open at 12:30. I arrived at Walmart a little early, just before midnight, and the line wound to the end of the building. I stayed in my car and waited until midnight. The line didn't move. At 12:20, I put on my mask (my white blood cell count is low and I promised Maripat that I would wear while shopping. I had intended to, anyway, but my promise made me less self-conscious). I locked up the car and strolled over to one of the police stationed at the doors to ask why no one was entering the building, He told me that the store wouldn't open until 1 AM! I decided to pick up my hard drive, first, and drove to Staples.

     Staples had opened before I arrived. I was directed to join a line of people waiting for computers. The line wasn't terribly long – maybe twelve people in front of me? But the line didn't move. After about twenty minutes, suddenly, employees received new instructions and the line now moved very swiftly. I bought my hard drive and splurged on a Kindle (I had borrowed Julian's while I was in the hospital and it was a terrific gadget!). The Kindle was on sale for half price AND came with a coupon for a $25 Staples gift card. But, it was 1:00 AM before I got back to Walmart.

     I hung out near the door, waiting for the line to end so the police would let me in without needing to walk both ways and through the cattle-shute, but the people kept coming! The cops stopped the line, finally, as the maximum capacity of the store had been reached! And the line was still out of sight.

     I walked to the end of the line, acquiring a carriage from another shopper who gave up. Two women had scooted ahead of me as I walked down, so I was right behind them, but the line was so long, we were about 20 feet from the start of the cattle-shute, at the corner of the sidewalk around the building. I looked around a bit and went into my zone.

     After five minutes or so, I suddenly realized that a couple had sidled up next to my carriage and were pretending that they were in front of me. This was NOT cool. The line move with a small start, then stopped and they definitely slid in front of me. The line was about four people wide, now, so I told the pair of women who had scooted ahead of me as I walked to the end of the line that I knew I was in back of them, but did they know who they were in back of? They pointed to another couple, and we figured out who was supposed to be where. The line started to move, and, as we arrived at the start of the shute, I told the cutting couple that I was in back of the two women, and that THEY were in back of me! They moved back. One of the women, the older one, asked me why I was wearing the mask. I told her that I had a low white cell count and she smiled and said, “That's what I thought.” She then told me that her sister had died a few years earlier from lymphoma.

     We chatted; the line became bearable. We all acknowledged that without the other two to talk to, we all would have quit waiting! We all wanted the same television, too, and fretted as time went by. The line moved with glacial speed. They were mother and daughter. I heard about the mother's sister in excruciating detail, but the woman also kept saying that her sister had a very rare form of lymphoma usually found in the very elderly. Her sister had a very hard death with many tumors.

     We talked about many things. Mom had never been in a Black Friday line before, so I told her about buying the Nintendo Wiis with Jack and how the line created its own order and enforced it. The deadline of 2:00 AM came and went. Mom and daughter had also acquired a carriage, abandoned by another shopper in the cattle-shute. The couple had also tried to grab this, too. Mom helped both her daughter and me to maneuver the carts through the zig-zags of the shute. We had a system after only a few zigzags, so by the time we were ready to enter the store, we were a team.

      Finally, we arrived at the end of the shute, near the doors, at 2:45 AM, but were forced to wait for more customers to leave, before we could enter. The man from the couple behind me was trending on my heels. I could tell that he planned to sprint past me as soon as he could. I had overheard them say that they also wanted the same TV that the three of us all wanted, but we had agreed that we preferred a raincheck, if only to not have to carry the TV that night!

     The cop came back to let 25 more people enter and I was number 13. We quickly wheeled into the store, channeled in the opposite direction from where we wanted to go, and the couple zipped past us as we slowed momentarily to look for an employee. We opted to cut through a path in clothing, directly to the middle to the store. There, in the central aisle, a blue-clad Walmartian was assisting customers by doling out DVDs. She was a little snippy, but directed us to the area where they had been handing out the rainchecks for the TVs. The raincheck person was gone. Daughter was ready to quit, but I said that I wanted to talk to someone at the courtesy desk. 

      The entire front of the store was cordoned off, with Walmartians guarding the checkout line (which wound throughout the store and must have been at least 90 minutes long). I asked a Walmartian if I could cut across, gesturing to my empty carriage. He lifted the tape and the three of us sailed through.

     There wasn't anyone at the desk, but, after a minute, a woman came over to tell me that the desk was closed. I told her that I'd been in line for over two hours (it was just after 3:00 AM) and that all I wanted was a TV raincheck. She smiled and said that she could help. She reached out to open the locked door behind the counter and circled around, pulled cards from under the counter, and handed me one! Mom and daughter had started to leave, but lingered to see me acquire me card, and came up. I assured the Walmart manager (or that is what she was) that the ladies had been right in front of me the whole time, so she gave them cards, too. Then, she proceeded to check us out, letting us bypass that horrendous line!

     I was overwhelmed. Daughter suddenly apologized for cutting in front of me to check out, but I told her that she was in front of me in line, so it was no problem. We all waited for the others to complete our purchase and left together, laughing and congratulating each other. I was completely enervated. I was so tired that I had some difficulty in driving home but there weren't many people on the road. I collapsed onto the sofa and slept soundly for eight hours. I'm getting ready to make pineapple upside down cake for my contribution to dinner.

     I'm pretty sure the manager gave me the rain check because of my mask, then extended the courtesy to the ladies because I vouched for them and for fairness for them, too. The funny thing is, if the couple hadn't cut in front of me (again), they might have followed us and gotten TVs, too! Occasionally, there is karma, even at Walmart.

Itchy

My tummy scar itches tonight. I really haven't itched for months, as I haven't made the kind of white blood cells that cause you to itch (those cells are called eosinophils). This has been the one good thing about not making enough blood, but if I'm now making eosinophils, I'm probably making other white blood cells, too, which would be good. I'd really like to make all of the right kinds of blood cells, once again, and not have to worry about infections.

The itchy scar is the one from my colostomy. It's about four inches long, now, and runs along my waist on the left hand side. I've got a bunch of other scars from various instruments used during the less invasive procedures. Eighteen months ago, I had my gall bladder removed endoscopically. My surgeon made four, one-inch long incisions to allow access to my innards – one high and about midline, one about in the middle but on the right hand side, one low on the right side, and one right above my navel. That one was a double – I had also been opened up on the same site previously, during my colostomy repair. I have a couple more scars from that surgery, but they've faded. I expect most of the small scars to fade, but the big one is mine forever.

My navel doesn't look the same anymore, either. Somehow, the scars have made it a lot longer. A funny thing happened to it after the gall bladder removal.

I'm highly allergic to adhesive tape and to the weird stuff that the nurses paint onto surgical wounds, underneath the paper tape that is supposed to be anti-allergenic. I almost went insane from the itching after my gall bladder surgery; the itching was much worse than any post-surgical pain. I had to leave the dressings alone for a whole week. My surgeon finally let me wash it all off but it was too late. In all of the places where the goop had touched me, the skin was severely swollen, bright red, scaly, and itchy – the bright red of a baboon's butt. My belly button is an innie – with the cut surrounded by all of the swelling, it looked like I had a second vulva and vagina - bare - on my stomach. And it itched! I couldn't stand to have anything, especially clothing, touch it or any of the wounds. After too many more days (they felt like years) I was allowed to use cortisone cream, but my navel was....wrong...for months. I'm still a bit self-conscious of it, as it isn't the belly button that I remember. But it no longer resembles a second set of female genitals, to my great relief.

Just remembering how itchy I was, has made me start scratching my face and abdomen, all over again! I suspect the worst tortures involve the application of itchy things.

Waiting game

It's nearly Halloween and I still do not have a definitive diagnosis of what happened to me, four months ago. I'm scheduled to have my third bone marrow biopsy in two weeks, and the results should be final two weeks after that. I've had frequent blood tests during my visits to the Leukemia and Bone Marrow Transplant Clinic at Mass General. Nothing changes very much - my cell counts hover between low-normal and below normal, but not so low as to require any intervention. I'm tired a lot of the time, but I went back to teaching at Holyoke Community College in September. I was losing my mind, just hanging out at home.I've got three classes - two developmental math classes and an anthropology class.

I had a minor setback last week, when I apparently contracted a minor virus; I spiked a fever of 102, but it only lasted about 12 hours. Still, I dutifully reported it to the clinic and was sent to Cooley Dickinson's ER for anther round of blood tests. The results were almost identical to the tests I had had five days earlier, at MGH. Another health annoyance - I tore part of my right quadriceps, picking up a bicycle in the garage. The tear might have been caused by the antibiotics I had to take after I got out of MGH in June, when my white count was so low. It hurts, but it's better to have torn the muscle than to have contracted sepsis. I like being alive, even though I'm cranky at times.

 I'm just so IRRITATED at the waiting game! Dr. Ballon thinks that my bone marrow was suppressed in June by a virus, but we'll never know which one. The most likely candidate is Fifth Disease. But, I may still have lymphoma, as well, but if I do, it is very slow growing. I need to ask Dr. Ballon about my prognosis after the next biopsy. Until we have some real data, it's all up in the air. I'm not a patient person, so having to wait and wait and wait for results just drives me CRAZY! But - it's my body that's not giving clear messages, so it's not her fault.

I'd like to have one full year - 365 days - of a good job, ordinary personal relations, and nothing weird. I want to have a boring, "normal" life for just one year. I've had a soap-opera life for too long.

Cancer patient

On Friday, June 21, 2013, my life changed. I had been feeling poorly for about a month and had barely moved off of my sofa since the previous Tuesday. My doctor's office called at 2:30 PM to check on me. I had visited on Tuesday, when I had been diagnosed with probable pneumonia. I still felt terrible, with fevers and chills, heart palpitations, and no breath. 

I was lucky that the office called; I had been thinking about calling them from days but I just didn't have enough energy. I now know that I might have died, had I continued to wait and not gotten treated. 

I see doctors at the University of Massachusetts health center; since it was summer, they closed at 5PM on Fridays for the entire weekend. The nurse who called offered me a number of choices: she could send an ambulance which would take me to Holyoke Hospital, I could go to the Cooley Dickinson Hospital ER, or I could come up to their walk-in clinic, if I could get there quickly. Since I know the doctors at the clinic, I opted to drive myself, but I told them that I wasn't sure I had the energy or enough air to walk up the hill from the parking lot, into the clinic. The nurse gave me a number to call to have someone come out with a wheelchair.

I drove the 15 miles slowly and carefully; I had forgotten that there was construction taking place on “The Notch”, the road over a small mountain range between Granby and Amherst. Traffic was stopped in one direction and it took about 20 minutes to negotiate the mile-long pass. I knew that driving myself had been a mistake. My vision became clouded by giant black spots and I had to pant so I wouldn't faint from the minor change in elevation decreased my oxygenation past the point of no return, but I made it. I parked in an emergency parking space, close to the entrance. I called the number and Eric, the receptionist, came out and wheeled me up the ramp, then immediately settled me in one of the examining rooms. One of the medical assistants came in and took my blood pressure; it was about 150 over 60, a very weird reading. My heart rate was over 90, despite my sitting quietly in the wheelchair.

I was immediately seen by Dr. Rosen, a small and kindly gnome. I had seen him before, occasionally, when my own doctor was unavailable. It was now after 4PM and he was concerned that, if he completely examined me first, there would not be enough time to perform any tests as the onsite lab closed promptly at 5 PM. So, he immediately ordered a battery of tests, both blood and urine. He then looked into my face sharply and asked if it was normal that I was so pale. I was startled; I hadn't looked in the mirror so I was uncertain but I said, “No.”

Ethyl, the medical assistant, wheeled me down in the elevator, where the phlebotomist allowed me to stay in the wheelchair while she did her job, rather than have me climb into one of her couches. She, also, commented on my pallor. She wheeled me down to the handicapped bathroom in radiology to produce the urine sample. The x-ray tech, another phenomenally kindly woman, wheeled me back to the waiting area, where Ethyl came for me a few minutes later. No one had called her; she thoughtfully returned when she realized that I was not back in the exam room.

I had barely returned to the examining room when my doctor, Dr. Rouzier, followed by his medical student, burst in, asking if I knew what the labs had shown. I said, “No, I just got upstairs.” He said that my blood levels were very low and that I needed a transfusion, so they would be sending me to Cooley Dickinson Hospital by ambulance.

We talked for a bit about why I might have such low blood levels. He looked very concerned, as did the student. He asked whether I had been vomiting or passing blood, or if I had any vaginal bleeding. I hadn't had any bleeding that I knew of. Dr. Rosen returned to examine me before the ambulance came.

Dr. Rosen informed me that he had to examine my breasts and do a rectal exam. I sighed. Ethyl came in to be a witness. I removed my shirt and bra, baring my breasts, and Dr. Rosen quickly palpitated them. There was nothing. Then, he asked me to roll over on my side. I took off my ortho boot, as it was hard to balance on the examining table with it and unzipped my pants and pushed my underpants down, slightly. This was a new experience for me and I was scared, so I had to crack a joke. I said aloud, “Relax and think of England.” Both Ethyl and Dr. Rosen guffawed, then Ethyl helped me to balance on my side as Dr. Rosen stuck his gloved finger into my rectum. He collected a small sample and placed it on special cards, to check for rectal bleeding. There was none. I pulled my clothes back up and Ethyl hooked me up to an EKG machine to take a trace.

In the interim, I had made a number of phone calls to John, Maripat, and Jack. I knew that my car would have to be removed from the fifteen minute space it occupied and I desperately needed emotional support. I also needed to know that my cat would be cared for if I was going into the hospital.

Maripat and Julian had been playing golf in Amherst; they got a raincheck for the rest of their round and came quickly to UHS. Maripat sent Julian inside. He would drive my car to John's house. By and by, John arrived, also. They took my keys and I told them all that I knew. John had already been on the phone with his friend, the chief of radiology at Cooley Dickinson. He thought that I would have an immediate CT scan, followed by surgery to close whatever was bleeding inside me. I doubted that I was bleeding internally; I had no pain or large bruises on my abdomen, just a flock of small ones all over my arms and legs.

The ambulance came and they loaded me up. Dr. Rouzier gave me a big hug. John took pictures. Then, they wheeled me into the ambulance. The EMTs installed an IV line into my left arm at the elbow and we were on our way. They continuously monitored my blood pressure and pulse, and also took an EKG trace. They hit the lights and siren at every intersection. We arrive at Cooley Dickinson in record time. I was promptly wheeled into an exam room. On the way in, a sarcastic-sounding doctor asked what I thought my problem was; I said that my heart was racing and I couldn't catch my breath. He wrote on the big whiteboard, “woman with anxiety.”

The nurses, doctor, and technicians quickly took more blood samples and yet another EKG trace, then a chest x-ray. About this time, Maripat, Julian, Jack, and Kirsten arrived. All were required to don masks before they came into the exam room. Julian found a white-board marker in my room and drew teeth and a nose on his, then the others all did the same. The silly masks kept me cheerful in spite of my fear. John came and went; he is always very uncomfortable in hospitals and this was no exception. A nurse announced that they would be giving me four units of whole blood, and that it would probably take all night. The ER nurse started a second IV port, just below the first one. They started the first unit around 9 PM. They had to monitor me, to see if I would have any allergic reactions to someone else's blood. I was fine. Eventually, they admitted me to the hospital. We made quick plans: I needed underwear and the charger for my telephone. And Jack had to catch my cat, box her, and bring her up to Amherst so Maripat could take care of her.

I didn't want to tell Margaret because I didn't want her to have another stroke from worrying about me. I decided to call her Saturday morning, after Jack got there, once we had some news. There's nothing as stressful as NOT knowing and being unable to help, but she needed to know. Jack and Kirsten came up to my room with my things around midnight and we briefly chatted; Catto had been successfully ensconced in Maripat's guest room, then the kids left. They had to return to Brattleboro for the night.

I had had no dinner and I was somewhat hungry. The ER nurse had offered me crackers but, of course, I can't eat them because I can't eat wheat without getting diarrhea. The floor nurse brought me a turkey sandwich, which I also couldn't eat as it was on white bread, then a container of vanilla Greek yogurt. I had never tried vanilla yogurt before; it wasn't bad and it filled me up enough. I talked with Dr. Stanley, the hospitalist who admitted me to the floor. After midnight, they finally started the second unit of blood and gave me my routine asthma medications. I had to be monitored before and during the transfusion. My temperature, blood pressure, and pulse oximetry were all taken every fifteen minutes. Since each unit took about two hours to be transfused, I didn't sleep until the last was completed, at about 5AM. Then, I required routine monitoring at 6AM, so I was awakened. I stayed awake until after the shift change and another monitoring, then fell asleep until the hematologist arrived, about 8:30.

The hematologist told me that he thought I had aplastic anemia and that I needed a bone marrow biopsy to diagnose it and, while he could do it, I would be better off at Mass General Hospital in Boston. This really surprised me; I admired how he did not let his ego stand in the way of my best interests. He also thought that the biopsy should be done as soon as possible, but he would need to see when a bed might be available. He thought that, while it was possible I could be transferred that day, it would probably be Sunday or even Monday. He left to make arrangements.

I ate breakfast slowly. I was hungry but at the same time, I wasn't. I was very frightened. Why had  bone marrow apparently failed? I wasn't making ANY blood cells – red, white, or platelets. It was a mystery.

I called Margaret around noon, about the same time that Maripat and Julian arrived at my room. Again, they had to wear masks and gloves, so Julian decorated them. I told Margaret that I wasn't making any blood, but wasn't specific about what the cause might be, as we really didn't know because there wasn't enough data, yet.

Shortly after one, the nurse came in and told me that Mass General had agreed to take me that afternoon. Arrangements were being made with the insurance company for an ambulance to take me, and it should arrive in about an hour! Maripat and I quickly packed my belongings. After the transfusions, I felt MUCH better – no more palpitations and I was lively and able to think a lot more clearly despite my lack of sleep. Of course, the ambulance didn't come until about 3PM, but we were ready for it when it arrived. 

I had to wear the mask, now, as the EMTs pushed me through the hospital, and, as with the ambulance the night before, I would have to be continuously monitored, or insurance would not pay for the trip. I had more red blood cells so I felt better but I was at risk as my platelets and white cells were still low despite the transfusions. These ambulance attendants were completely different from the ones who had transported me from Cooley Dick to the rehab center after my emergency colostomy, three years ago. Those monsters treated me like I was rotten meat; these were very pleasant and even funny. I chatted with the one in the back the entire trip. He was a pleasant biology grad student in his late twenties, married but no kids (yet). I took off my mask in the ambulance but replaced it once we got to Mass General. They kept me distracted from fixating on my illness. 

I now had a massive blistery-looking bruise on my upper arm from the blood pressure cuff. I'd never had THAT happen before. Low platelets, I guess.

I was taken to the tenth floor in the Lunder Building. The Lunder Building is pretty new; it was constructed within the last fifteen years and it was designed to have the top patient floor, the tenth, be as safe and comfortable as possible for immuno-compromised people. Every room is a single and is completely handicapped accessible. In addition, the rooms are positive pressure and the air is highly filtered and air conditioned. Every room has huge windows, a sofa-bed, a recliner, and a mini-refrigerator, for the comfort of patients and their families. My new home was room 1080, on the yellow side.

Dr. Amrein was my hematologist while I was there. I was questioned and poked and prodded. Copious blood samples were taken and another chest x-ray was performed. He told me that he suspected that I had Hairy Cell Leukemia, but that he would not perform the bone marrow biopsy until Monday. There were other tests that he wanted to run, first.

On Sunday, I had a PICC line installed in my upper right arm, then I had a flood of visitors. Bill Collins, Neil Fennessey, Amysue Chase, and my cousin, Jonelle Angel all came, one after another. At one point, I was given another chest x-ray, to verify the placement of the PICC line, while Bill was visiting. They did the x-ray where I was sitting on the sofa! We worried about anyone in the next building but the tech MUST know what he's doing, right? I was also visited by the chaplain, who said a prayer after being deeply amused by Neil and Bill. Bill made plans for the UMSFS reunion, Neil brought a box of “medicinal chocolate.” Amysue brought books and a lovely knitted shawl. Jonelle gave me hope. After my visitors left, my nurse removed my IV ports as they were no longer needed, since I had a good PICC line giving direct access to my vena cava. That was a relief; the IV ports hurt very badly and I had massive bruises from them, too.

Monday was the bone marrow biopsy. One of the blood tests of the previous day had not been positive for Hairy Cell Leukemia, so my illness was still a mystery. Maripat and Jack arrived just as the biopsy was finished, so I was distracted from the pain as the anesthesia wore off. I stayed lying down for an hour after the biopsy, to make sure the wound scabbed over, then I walked around the floor for the first time with my nurse. I was shown the kitchenette, where I could get snacks and store frozen foods. I had to have the dressing on my PICC line changed because it had been bleeding a lot and it needed to be checked by the PICC line nurse. She couldn't flush it after she changed the dressing, but the problem was positional – she had my arm outstretched and that placed stress on the line. My arm has to be at my side for the line to work. My night nurse figured this out!

Tuesday, I talked to a physical therapist and was assigned exercises. I did three laps of the figure-8 that comprises the tenth floor. The patient and family lounge on my side overlooks the Charles River, while the lounge on the other side overlooks the city. I need to look at a map to really appreciate what is where.

I need to figure out who my nurses are. There are no CNAs. Nurses serve twelve hour shifts and they do all of the direct care and patient education. This is VERY different from Cooley Dick, where almost all of the hands-on care is performed by CNAs who are poorly paid and occasionally cruel.

I had the same day nurse for several days; all of the nurses were terrific. They came quickly whenever I pages them and they TALKED to me, teaching me about my illness, as much as possible.

My red blood count was lower than they allow it to be on Tuesday, so I got a unit of packed red cells. I got another at noon on Thursday, even though the count hadn't dropped, because I went home Thursday afternoon, June 27. They didn't want it to possibly drop before I came back on Monday, July 1, for testing and to see another hematologist, Dr. Karin Ballon.

My diagnosis had changed, again, as part of the bone marrow biopsy results had come in. I was no longer a probable leukemia patient; once again, I was an aplastic anemia patient. I had the dressing on my PICC line changed again on Thursday. I was developing blisters where the adhesive touched my skin, just like when I had the colostomy bag glued to my abdomen. I told them that this would happen but they didn't want to use any steroids which might further suppress what little immune system I have.

I was sent home with a big box of PICC line supplies. John picked me up and brought me to his house. Maripat vacated her yoga room (Jack's old room) with its low twin bed for me; the double-sized guest bed in the guest room was too high for me to be comfortable in it. I stayed there until
July 10, when I finally went home.

Jack drove me to Mass General on July 1, to go to the leukemia and bone marrow transplant clinic. They drew blood for a CBC and liver chemistry. My biopsy results were still not in, yet. My blood counts had improved, the platelets to the bottom of the normal range, but my white count and especially my neutrophil count were the lowest they had been since all of the transfusions, but my reds had increased a little. I was given an appointment for the following week.

Again, Jack drove me in on July 8. This time, all of my levels had improved, which meant that I was making blood, again. Still, my white and red counts were below normal, but both they (and even my neutrophils) had increased over the course of the week. In talking to the doctor, I was no longer diagnosed with aplastic anemia (I guess because I had spontaneously started to make blood, again). And the full report on my bone marrow biopsy was finally available. The pathologist thought that I probably have B cell lymphoma, despite his not finding any cancerous cells in the biopsy. His reasons were that I had an unusually large amount of lymph in the marrow, and the marrow was also abnormally thick. Also, the percentages of the different types of cells in my marrow was very abnormal. Although he did not find any cancerous cells, some of the tests did not have enough cells to definitively say that there was no cancer.

My hematologist did not agree with the pathologist. She had examined me; I did not have any of the other symptoms that she would expect to see if I had lymphoma, such as enlarged glands and abdominal differences. She thought that I might have had a viral infection that silently damaged my bone marrow, from which I was now recovering. She thought she might want to perform another bone marrow biopsy in two weeks. She would make a final decision after the results of a CBC, to be performed the same day. So, I was to return on Monday, July 22.

I chatted with a teenaged boy in the waiting room, before my appointment. He was also from Western MA. He had an unusual blood condition, with some similarities to aplastic anemia. His girlfriend had aplastic anemia, though. He asked if I had been on Lunder 10; we bonded a bit over this as I guess admission there is proof that you have something really bad. He needed a unit of platelets, so off he went to a treatment room.

Am I , or am I not, still a cancer patient?

How I became an extra in an action movie and what followed

Friday, June 14, 2013.

About twenty years ago, the Hampshire Gazette, a local newspaper, had an article suggesting that local people come in and try out to be extras for a movie being shot in Northampton. Jack was little enough to still be in his stroller; Amysue Chase met us for an afternoon shopping in Northampton. We ran into a friend of hers, who thought that I was her partner and that Jack was her baby (both of them had blond hair and Amy was pushing the stroller). We went to a downtown office; they didn't ask us to fill out a card so that was the end of that.

About six years later, “The Cider House Rules” was looking for little boys to be orphans; it was also being shot locally. It was August and there was a line of about 1000 kids lining the Northampton High School parking lot. We never got interviewed and just left Jack's photo and my contact information in a box. On the night before Jack's last day of school before Christmas break, I got a telephone call, asking us to stand by in case they were going to shoot one more day. They didn't shoot, so Jack's big chance was over before it started.

A couple of more movies were filmed locally but by now, the casting agency had gone online. I posted my information but rarely clicked on the “available” button as all of the movies seriously conflicted with my full-time teaching job. I got a stand-by call once, for three days on “Here Comes the Boom,” but I never got the final call to confirm.

A few weeks ago, the casting agency sent an email, asking for extras who could use tools and who were familiar with DIY projects. I've been a tool-user since I was a little kid, painting the baseboards at age six and helping with the bottom end of wallpapering when my parents finally finished their ten room house (five kids – we NEEDED ten rooms, which included a mother-in-law apartment!).

I had started to put an addition onto my own house six years ago, with the money I won on “Who Wants to be a Millionaire.” I've built lit and smoking guitars, bookcases, installed tile flooring, constructed stud-walls, and I really like wood-working. And archaeologists are all tool users, so I sent a photo of myself at the hackerspace, standing in front of the drill press, along with my DIY resume. To my surprise, I got a call last week, asking if I really was a tool user, and inquiring about my availability for next week and the following Monday. I'm currently unemployed, so the calendar was bare. Of course, I said yes for tool user. Then, the agent asked if I could play softball. I was surprised at the question but I played on a co-ed team for two years. I said that I wasn't very good but I played. The caller said, “It's all CGI. OK.” All of the potential extras, including my file, would go to the director. I expected that, like every other time, this would be the end of my movie career. But it wasn't!

This morning, I got another call, to see if I was still available on Monday. I have a doctor's appointment but I can change it. Then, I got the “real” email tonight, asking me to immediately confirm my availability. I did. I've got the job, for Monday, at least. They might use me for as many as six days! I could use the money. Monday will be a long day, they say, because of all of the paperwork and costume decisions. I was asked to bring several possibilities – jeans or other pants and neutral-colored short sleeved tops in several colors. No open-toed shoes. I'll bring four pairs of pants – black jeans, blue jeans, a new pair of khaki-colored pants with zippered ankles, and gray cargos. I've got a black polo, a mauve tunic, a red tunic, and a dull purple polo set aside and I may rummage for more choices. And a new pair of black New Balance shoes, plus my air cast and all of its paraphernalia. This way, I don't need my open-toed cast and I can walk with both legs of the same length – which is a lot easier on my knees.

I have to be at the set (a decommissioned Lowes store) at 5:45AM in Haverhill, MA. It's a two hour drive. A long drive, worried about getting delayed, is not my favorite way to start a new job.

Sunday, June 16, 2012

I woke up this morning at 2:30 AM, in a bit of a panic. I started a course of oral prednisone on Friday morning to improve my breathing – I've had moderate asthma for over a month and I was worried that not breathing well might be a problem on set (I got the first call about availability on Thursday). I'd been considering starting the course of prednisone for weeks - it wasn't JUST for the movie that made me start the pills. But, sometimes steroids cause sleep problems and anxiety and I've got both in spades, today. Yuck!

It also occurred to me that I never thought that I'd really get an extra gig. I have applied for so many jobs in the last three years and only gotten a couple - all of them teaching, which I've done before, so they aren't totally out of left field - I thought that I'd never get one of these and if I did, it would be for just a single day! This seems like it's going to be different - I got another email this morning from Ashley at Boston Casting, telling me to bring a reusable water bottle as Columbia is plastic-free, and giving me the number I'll need to get on set. There appear to be 15 extras, according to the list - five who are prioritized and then ten in my group. I'm really scared. I feel like it's the day before school starts. I don't know what I'm doing but I'll fake it.

Tuesday, June 18, 2012.

I decided the prednisone was making my heart race so I stopped taking it. I only got an hour of sleep before it was time to leave for Haverhill, then I was late in leaving the house so I drove like a maniac for the whole way. Dawn broke, totally blinding me for the last fifteen miles of the drive but I made it, just in time. I filled out paperwork, was instructed to change into my black Renaissance polo shirt (I had my blue jeans on), and was given a gray apron with a button “I'm cool with tools.” A bunch of us were then sent for props; we all got work gloves to stash in our apron pockets. There were a lot more extras – my group of fifteen arrived at 5:45 but others had different arrival times. The five prioritized people in my group were SAG members. I chatted with several; I was the only total newbie. This area, at one end of the store, became the “background corral.”

The store was HUGE. A set for a house or apartment had been constructed at one end while much of the rest was set up as store, complete with a garden center with real plants. I overheard a costuming person say that the production company spent a million dollars renting the store and setting it up.

I got called with a group of other extras to be placed. I wasn't used the first time, so I stood around in an aisle, waiting. After a couple hours, another guy snagged me a chair and found some boxes for himself, but I only sat for about ten minutes. I was assigned to stand in an aisle, wait for Denzel Washington to reach a forklift, then walk down the aisle and out of the open big loading doors (which were covered with vertical plastic hanging barriers), gloves in hand. I repeated this several times. Then, they reset the camera angle, so now I had to follow the camera down the aisle and pass it before exiting. We added a bit where I encountered a couple coming the other way, turned to point at a rack from where I came, smiled and nodded to them, then turned back to exit. As I had originally held my red gloves in my left hand but was pointing with it, I swapped the gloves from hand to hand as I walked. Then, we were sent back to the corral, called back for another camera angle, then sent to the corral for lunch.

Lunch was served by pecking order; first, SAG and other union members, by the earliest call time, then just by call time. I was one of the last to get lunch as they called anyone after 5:30 all together. It was good but there wasn't much that didn't have wheat in it. I ate some salad, cut fruit, and a chunk of roast beef. it was delicious but I wasn't very hungry as I was not feeling good (but not bad enough to think I was sick). And, I was really sleepy.

After lunch, I got called out again to be set, this time on the front corner, to use a price checker and pretend to do inventory. I also straightened up the contents of the shelves. Denzel Washington was about three feet (or less) away from me at the beginning of this scene, but I was facing the shelves, not him. I repeated the same series of actions seven or eight times, then again for a different camera angle. Then, I got sent to another corner, for a “big picture” scene of the entire store, but was called back as there had been a decision to shoot the price checker scene a different way.

I went back for the “big picture” scene, but it was delayed while the “break-room scene” was done again (my price checker scene was outside of the break-room). I had been given directions to interact with a customer, so we both sat down on some lawn furniture while we waited. I dropped off to sleep for over half an hour, but eventually, all of the equipment came down to our end of the store and we got new directions to move around. Again, I interacted with customers and policed shelves for several rehearsals, then at least four takes. At the end, the director call that it was a wrap for the day. And for all of the crew to come back at 6:30.

I turned in my apron (I lost my gloves somewhere around lunchtime) found my paperwork, then finished filling it out. Then, I waited again for my turn in the pecking order. I changed into my ortho boot and wound up second to last. While I was waiting, I got a call from the casting company; I wasn't needed today. Which was just as well; I went to the doctor's and it turns out I have pneumonia! I did get a call today for tomorrow, but I told them I was sick but, if I was needed Thursday or later, to consider me again.

I stopped by my friend Skia's house on the way home; the original plan had been for me to stay with her if I was going to have several days in a row on set. She fed me some dinner - really good hamburger, eggs, and guacomole. I felt much better after I ate, so I drove home. And so, I can now say that I have spent a day on a movie set. It was a lot of running around and waiting. But it was fun. Probably not as a full-time job, but for a day – not bad!

Thursday, June 20, 2013

I got called again for Wednesday (and couldn't go), then I just got the call for another day, tomorrow, but I'm still feverish and jittery. I'm so disappointed! All I've done is lie on the sofa! With any luck, they'll call me for next week AND I'll be better!

Everything changed on Friday, June 21.

High school memories

      Yesterday, I sat down to talk to a fellow that I went to high school with. One thing that struck me was how few friends we had in common, despite a large number of common interests, now. The seeds of those interests were present in high school; how could we have been strangers? It made me think about the person I was, way back in the dark ages.

      In high school, I was a product of my childhood, and my childhood filled with fear. I was always afraid as a child and this fear still filled me, even in high school. My father, a wonderful dad to me, was also a violent drunk to my mother. I never knew which man he was going to be, when he came home. I looked forward to seeing him after work but he scared the crap out of me. And I was afraid of other people because I’ve always had a hard time recognizing anyone. In addition to mild prosopagnosia, to this day, even though my vision has been corrected with glasses for most of my life, I don’t recognize facial features unless the lighting is perfect (like on a stage). When someone approaches me, I only see the outline of their figure and how they walk, not what their face looks like. Think about how you feel when a stranger approaches you – to me, everyone approaching is a stranger. It’s human nature to be afraid of strangers; they’re scary. I was always afraid.

      Then there were the social issues of high school. I had gone to elementary school in Granby, a very small town adjacent to a military base – the kids in my school were either “townies” or “new kids.” I was a “townie.” The new kids were almost always the children of air force officers. They were interesting because of all of the other places where they had lived and our teachers encouraged us to be friendly. I had lots of friends who were either townies or military kids, but this all changed when my mother and siblings moved from the spacious house that my parents had built on a multi-acre lot to an apartment in Amherst.

      When I started junior high school, I was a “new kid” in a college town. In Amherst, literally next door to Granby, the social order was completely different. The junior and senior high school served three neighboring towns, but they didn’t serve Granby, where I had gone to elementary school. Kids in Amherst were either from “old” families or somehow associated with one of the colleges. The “new kids” were almost always the children of students or professors. The children of students were assumed to be transient and not worth becoming friends with, while the children of professors were incorporated as they would be encountered by other faculty kids at faculty family functions. And both faculty kids and “old family” kids had gone to elementary school together. I moved to Amherst because my parents had divorced and my mother started grad school, so I was assumed to be a transient (and not worth getting to know). To validate our student status, we had moved to an apartment complex that, essentially, only served students and student families. Faculty families, even visiting faculty, lived in houses, not apartments. The fact that we moved to a house the following year was irrelevant.

      Since I don’t recognize people, I had a very hard time making friends in Amherst, as I entered seventh grade. In fact, our apartment wasn’t ready until October 1, so we had commuted from Granby for that first month. My best friend from Granby had also moved to Amherst (a few months before me), so I had one friend at school but we didn't have any classes together. I made a few more friends once I joined the AV club. Eventually, I made a few more our of all of the students that I shared classes with, but I had a very small circle for the entire five and a half years. I missed the second half of my senior year because I graduated early – my mother remarried and moved to Canada between my junior and senior years and I moved in with neighbors that had had a foster child before me for the four months it took me to finish my requirements, then I had gone to Canada, too. Kids in the high school never noticed my absence.I returned to Amherst to start college.

      So, it wasn’t surprising that we had few friends in common. I had been, for the most part, invisible in high school, with my tiny circle of friends. This fellow had been a part of a more popular crowd – not the one that included the most popular kids but a “better” and larger circle than mine. My geeky friends felt like pariahs in the school and were never a part of the high school social scene, unlike Mark and his friends.

      I enjoyed our chat but noticed that I had changed a lot since high school. I’m not afraid all of the time. I can talk to people. Some of my social abilities were the result of simple maturation that hadn’t happened prior to my completing high school, while others were laboriously acquired in college and during adulthood. Some finally developed as a result of my finally accepting my ASD.  In any case, I could talk to this man who was a stranger to me but with whom I had a lot of memories in common. It was nice.