Wednesday, August 28, 2013


I'm going to be as short and pithy as I can because I'm typing with one hand.

On Friday my right arm became swollen, red, and hot to the touch. That afternoon I drove to my college roommate's house in Hamilton NY. Susan, who is a chiropractor, suspected cellulitis which is a bacterial infection of the skin. We had great time reminiscing about our naughtier years.

Sunday, Marty took me to the ER where they did an ultrasound of my arm, drew blood and gave me intravenous antibiotics and some potassium.

After a night of no sleep, I looked like a zombie and felt like one too. Today, when I saw no improvement, I went to the doctor. She me gave yet another antibiotic and told me to return tomorrow to see the infectious disease doctor. Do you think I have enough doctor's? Do you think I'm a hypochondriac?

I'm staying home for the rest of the day, rain gently tapping at my window, dog snoring by my side. Oh yeah. I have my poetry to protect me.

Friday, August 23, 2013

Neurology Doc Says I'm "Normal"

My neurologist's name is Zoltan Fecetti. I think he's Bulgarian. He was thorough, and found no reason for concern. The biggest poster in his office is about Parkinson's Disease, from which my grandmother suffered in her later years.

He checked everything. He commented that the shoes I was wearing were not good for my balance. These were the shoes I was wearing for the face-plant and the day I fell while getting off the bus in NYC a couple of weeks ago. I guess I can only wear these sandals, which have no heel and are super-comfortable, when Marty is escorting me to dinner or an event.

The doctor prescribed an extra neurontin per day for neuropathy. Personally, I think my problem has more to do with my right leg being weaker than my left. Maybe I should just walk softly and slowly and carry a big stick for support.

Thursday, August 22, 2013

Blue Like Me

My face is an interesting shade of dark blue. The bruising has now spread to my upper cheeks. Every morning I wake up to discover a new face in the mirror, feeling as though I'm living an existential nightmare.

Just like Kermit admitted it wasn't easy being green, it's not easy having a blue face. Maybe if the rest of me were blue it wouldn't be so bad. If I could put a scarf around my head and face, I would actually look pretty good since my eyes appear beautifully made up. But I'm not good would scarf-tying, and I'd hate to have it unravel while I'm driving.

Wednesday, August 21, 2013

The Plog--A Retrospective Part IV

Here are more snippets from the blog I began nearly four years ago.

May 9, 2012. "New trees are planted everywhere (at Ground Zero), but one is actually from the original site. It is called the Survivor Tree. Reduced to an eight foot tall stump on September 11, 2002, it was rescued and brought to another site and put on life support. It slowly emerged from its coma and sprouted new growth. One more trauma to the tree occurred before it was safely returned to its original site: A hurricane uprooted it last summer. They took the tree and planted it in the lovely memorial park. It now stands 30 feet tall and is in full leaf.

As a leukemia survivor, I identify with this tree. May it live a long happy life."

July 7, 2012.  "I went to bed early last night after a very pleasant day which included seeing Harry at his new job at Merriewold Country Club. We took him and his co-worker/friend Matt to dinner in Monticello and were home by 7:30.  For some reason I became teary and sad. I started reliving my life since that awful day in 2006 when I was told I had leukemia. I focused on every hospitalization, every chemotherapy, every set-back, every small victory and all the anxiety that coursed through my body. Eventually, I fell asleep. Who wants to relive six years of illness? No one. But sometimes the horror pries itself into consciousness and and snuffs out the good things that have happened, are happening and are soon to happen."

August 13, 2012. "I thought my life was ending, again. The small mass on my nipple turned out to be leukemia cutis, which is an isolated pocket that manages to fool the anti-leukemia T-cells and find sanctuary at skin level. These extramadullary sites can appear anywhere in the body, so I had a PET scan to check for other hideaways. I also had my 18th bone marrow biopsy, which hurt like hell. I got the news of the leukemia cutis in the recovery area after my cataract surgery. Dr. Giralt called me on my cell with the news. I was devastated. Thankfully, my friend Dianne was picking me up to take me home, so she helped make me feel a little better. I met with the radiation oncologist this morning to find out about targeted therapy, Dr. Giralt called to say the marrow was clean. Dr. Giralt also mentioned a series of shots I'll receive 5 shots in my thigh on, one a day for 5 days each month. Onward."
August 28, 2012. "I went to the radiation suite, changed into my backwards robe sized for a 200-lb. person, and waited my turn. When they called me in and started setting me up on the table, Billie Holiday sang softly in the background. Since the position I have to get into is fairly uncomfortable, it was nice to hear a familiar voice."

August 30, 2012. "This morning I felt the full meaning of the "plog." As I lay stretched out on the bed, feeling sad, I was at once bogged, fogged, flogged and nogged. As energy leaked out of me, I saw myself spending the day drifting in and out of sleep and not caring much about what happened."

October 10, 2012. "We went out for Chinese food yesterday with our nephew Mark who lives in Maryland. This was what my fortune cookie said: "You could prosper in the field of medical research."
It got me thinking. Maybe I could pre-donate my body to science, collect the money now, knowing I would be gleaned for side effects relating to leukemia and graft versus host disease when I die. If they wanted to, they could take non-essential bits right now: skin scrapings, organ biopsies, scans, and the like. Heck, they may have developed the technology for a Fantastic Voyage exploration using tiny robots.
I doubt this would be legal or considered ethical. Why shouldn't I make money from my misery? Perhaps pay off medical debt? I'd be less a drag on my fellow Americans who're now paying me disability."

January 30, 2013. "Who knows whether Bag Balm will be the miracle I want it to be. I'll use it for a week or so and see. At $10 for 10 oz. it's relatively cheap, and if it works, I can probably order the cow size."

February 18, 2013." This is what withdrawal feels like. On February 1, I tapered from 20 mg of prednisone to 15. I've been on the higher dose for over 2 years. I know I just have to stick with it and it will be alright. I have phantom pains, nausea, and find myself taking an ativan when things are particularly bleak. And oh yeah, I like to sleep. On Saturday, I napped for 3 hours during the afternoon. And I had company!!! It was family, but still. I have to drag myself out of bed in the morning because I don't want to remain a slug and not have to be a rational human being."

April 19, 2013. "I had a dream last night in which a huge German shepherd knocked me down and took my hand into his mouth. I just laid there, as still as I could be. It was like a test, and how I reacted would determine my fate. The fallout from my transplants, most notably the graft vs. host disease, has been challenging. Then there's been the destruction of my tear glands, the loss of 2 teeth, 2 melanomas, cataracts on both eyes. I've somehow weathered these with what I like to think is grace. I didn't moan too much and tried to make light of my infirmities. After all, I know leukemia survivors who have been called to cope with similar issues. And then there are those who didn't survive.

I want to thank a dear friend I spoke to today who gave me some useful and sensible advice. Maybe he was that German shepherd trying to direct me to a better place, back to the fearless, confident person I used to be."

Tuesday, August 20, 2013


How many times have you been admitted to an emergency room? I had a chance to ponder this question about myself, and first I thought three, including today. Yes, I spent a couple of hours in the hospital ER where I get my Vidaza injections. The nurses took one look at me and called a covering oncologist who called off the shot and said I needed to go to the ER downstairs.

They put me in a bed in one of the rooms. A nurse came in and asked me if I'd been beaten by a loved one or anyone else. I said no, but I completely understood what she was trying to ferret out. Back when I was a kid, this would never happen, and I know this from personal experience. I was alone for 15 minutes before the doctor came in. That's when I started thinking about ER visits.

The first time I went to the ER was when I was 10, had fallen off my bike and hit my knee on a curb. It was a Sunday (what a memory), and the ER was packed with people who'd nearly cut off their toes while lawn-mowing and other bloody injuries much more serious than mine. Four stitches and hours later I was discharged.

The second trip was when I was in college and got hit by a car while riding my bike. I remember flying into the intersection and feeling embarrassed by the attention I got. I had a cut on my ear which needed two stitches, and a broken tooth. The driver of the car paid for everything.

The third trip was shortly after my first chemo treatment. I suddenly spiked a fever and was told by my oncologist to go to the hospital right away. This was the worst experience in the ER cannon. I was admitted, put on anti-bacterial intravenous drip and placed on a cooling blanket, plus packed with ice like a fish. My temperature rose to 105.9.  It was pure torture, and my husband had to watch the whole thing and worry about whether I'd be brain-damaged or worse.

The fourth trip happened on a cold snowy night after I'd had a catheter inserted in my chest earlier in the day. When I went to bed, all was well. A couple of hours later I woke up in a pool of blood. We took a cab to the hospital where I'd had the catheter put in. Once admitted, I spent hours on a bed next to the nurses' station since all the rooms were filled. My treatment consisted of nurses putting pressure on the wound until the bleeding stopped.

 So today was my fifth visit to the ER. I hope to hold it at that.

Face Plant

Here's another one for the books: yesterday I did a face-plant. It was quite easy for me to do, considering my lack of dexterity. I was taking Buck for a walk. I stepped outside and tried to manage a blind dog while turning to grab the pooper scooper, a device I must use because I can't bend down and grab things.

I slammed intothe pavement outside my door, hitting my forehead, the bridge of my nose and my lip. The first thing I checked for was broken teeth. I had miraculously escape that injury. As I rose, I saw blood everywhere. I ran inside and pressed towels into my face. I dared to look in the mirror to see the damage. The next thing I did was take an Ativan and some ibuprofen. Then I took out the ice pack, got on the couch and applied the pack to my face.

After that, I noticed other cuts I had to attend to and since my wrist hurt I put on an ace bandage. I woke up this morning to two black eyes and a face out of a horror movie. But I feel okay, just a little muscle soreness. I was able to carry on with my morning routine, including walking Buck to the park without incident.

This afternoon I'm going to the hospital for a Vidaza injection and will have the nurse look at my wounds. Then it's off to a mammogram and a bone scan. I think my bones are pretty strong when you consider all the times I've fallen without breaking anything.

Thursday, August 15, 2013

The Plog--A Retrospective Part III

These memories are starting to wear me down, but they're helping me deal with what's happened to me. Plus they make me laugh.

January 25, 2010. "I tried to use my time tethered to the (Photopheresis) machine wisely. Unfortunately, I couldn't see straight most of the time and so sat there like a slab of meat undergoing a bizarre koshering ritual. My blood was sucked out and sorted into components. The T-cells were isolated and treated with UVA light. Most of the blood was returned to me. T-cells are the white blood cells that are attacking my body, keeping it leukemia-free but wreaking havoc on various body parts and systems. The treatment is a non-toxic way of handcuffing these bad boys and keeping them in line."

March 15, 2010. "Here we are back at the Ides of March. Today is Leah Ryan's birthday. Leah and I were cyberspace buddies who never had a chance to meet in the real world. She died of leukemia in June 2008, after a transplant that didn't work."

March 25, 2010."Five years ago today, I was diagnosed with leukemia. I may be badly bruised, but I'm not beaten."

April 14, 2010. "When I find myself in times of trouble Mother Mary comes to me, whispering words of wisdom, let it be. Mom, November 24, 1931 - April 14, 1985"

May 10, 2010. "I had all my chicks together on Sunday (Mothers' Day), the only gift I wanted."

June 9, 2010. "Dori fought the good fight, a fight I well understand. The worst part of the struggle isn’t the nausea, the pain, the fear, the boredom. The worst part is the mental anguish that comes from watching loved ones worry. Leaving this life is hard; leaving your family and friends exquisite torture."

July 18, 2010. "After 7 nasty months of taking this cruel but effective medication, I'm cured! My liver has off-loaded all the iron necessary, thanks to Exjade. Does this mean I'm jaded again?" 

November 17, 2010. "Early yesterday, I walked to the surgeon's office to have a bit of my cheek sliced away. Two months ago, a tiny melanoma was found there by my dermatologist. The worst part was the lidocaine pricks, but I'm used to that."

November 29, 2010. "Friends, family, doctors, and readers of this blog know that severe dry eyes have been my Achilles heel for some time now. Of all my symptoms, my eyes have prevented me from doing so many things. They also make me clumsy. And did I ever mention that they hurt?" 

Saturday, August 10, 2013

The Plog--A Retrospective Part II

Bear with me as I add more excerpts from this blog. You'll find Part II below.

May 21, 2009. "The PJ Freedom Fund is now accepting contributions. Here's what I need:

*pies with tools inside
*tickets to a remote (tropical) location where coffee is grown
*a new identity to fool those bad ass leukemic clones
*an order of La Cirque's Pasta Primavera

June 9, 2009. "My oldest son, Mark, earned his high school diploma on Sunday... I'm to be at the hospital in an hour for a heart scan, a test that determines if your ticker is up to additional toxic assault. I'll check into my room and the chemo will start dripping by mid-morning. I'm trying not to be too morose. Looking at the graduation photo makes me smile. I know what I have to do."

July 18, 2009. "I am to be admitted Friday, July 31 to have a catheter surgically implanted in my chest and to begin preparation for my second transplant, which better be the coup de gras. How much can a woman take?... I have two weeks to live large, and I plan to render each day down to its essence. Time will neither fly nor creep because I'm going to pay attention to the here and now. I've stopped wearing a watch."

Clocks slay time... time is dead as long as it is being clicked off by little wheels; only when the clock stops does time come to life. ~William Faulkner

August 5, 2009. "I have had a rough few days of it--serious chinks have developed in my armor. The cytoxin caught up with me on Monday. On Tuesday, I started total body radiation or TBI. It feels like nothing while you're having it, but a few hours later you go comatose and just generally wish you didn't exist."

August 27, 2009. "Suddenly, you feel very odd, and your nurse sees it on your face. Your heart is beating a mile a minute. We are not figuratively speaking here. Your nurse calls in another nurse whom she tells to page the doctor on call. The EKG machine is wheeled in and you are quickly hooked up to it. Your heart rate is not just irregular but high, very high. A doctor comes in and does a quick assessment, assuring you that it's probably not a heart attack. Still, you hear a nurse ask if she should get the crash cart. You are suitably terrified. The doctor explains that she is going to inject you with a drug that will make you briefly feel like you've downed 100 cups of coffee. You can't imagine what that feels like. How bad could it be? Bad, very bad. You feel as hot as those 100 cups of coffee, but you also feel like you're about to explode. Is this it? Is this where it all ends? No, your heart rate eventually returns to a nearly normal and rhythmic range. And to calm any fears you may have about my health, let me also tell you this:

I'm going home today!

November 27, 2009. "Except for the fact that the turkey was the worst I've ever cooked, Thanksgiving Day was the best in memory. I did most of the cooking, so I was exhausted by the time we got to dessert (plus, my ankles were swollen), but thankfulness doesn't begin to describe what I was feeling. For the first time since August, Marty and I and our three kids were all home. I'd been to hell and back in the interim, so there was a very special synergy to the reunion. I lived for this and times like them. I am a happy woman."

December 11, 2009. "It's finally happened: my blood type now matches my personality type, A. You've figured that out by now. Sure, living for six years in tropical paradise knocked me down to a B, but I lurched back into the A range within a year or so of returning to the US. Nothing is of course immutable, but I was pretty sure about blood type. Now, I match my kids. Can you imagine what living here is like? 

January 19, 2010. "When we got home, Marty slipped me into bed like a letter into a mail slot. It took me Sunday and part of Monday to return to normal energy levels. Pushing myself is good because in the end, it makes me stronger. Lazing about doing nothing for a day or so after the crash is quite soothing."

February 5, 2010. "Shortly after I was discharged from the hospital in August, I received a letter from Dana-Farber wanting to know if I would like to contact my stem cell donor. I was not ready. I was shaky, could barely write or type, felt like hell and frankly, I didn't want to send a thank you note and soon thereafter kick the bucket. On Wednesday, I decided it was time to make a connection. I looked for appropriate stationery, nixing the pad bordered with red roses, and the one with the horse logo at top. I found some pale blue paper and went with that.

The first attempt to write the letter ended badly. I messed up the date. The second went more smoothly, and I managed to write two paragraphs before the waterworks began. Fortunately, I moved the stationery out of the way so I wouldn't be sending my donor a tear-stained display of gratitude. Composing myself, I continued writing, trying to show what his gift had given me. Concrete things--not "life" or "a shot at a cure"--but how my donor's generosity gave me a wonderful Thanksgiving with my family, visits with friends, outings to see my children race, a smile on my husband's face."

Thursday, August 8, 2013

The Plog--A Retrospective Part I

On August 8th, 2009, I received my second stem cell transplant. In theory, I'm four years old. I only whine a little.

The Plog was born in August 2007 when I had my first transplant. I thought I'd include some excerpts here. I want to credit Ann Gregory with leading me through this journey. She's my Virgil. That makes me Dante who read what was posted outside the gates of Hell: "Abandon all hope, ye who enter here." All of us made it out alive.

September 3, 2007. The "rabbit" drug," used to wipe out my immune system was a bad experience. "Tomorrow the silly wabbit weturns (calling Elmer Fudd!), so who knows what or if I'll write. Do bunnies write?"

September 26, 2007. I was discharged on Monday. Here's how I did it. "Beginning last Friday, I started making suggestions to hospital staff that I thought Monday would be an acceptable day to release me. My ulterior motive was that I wanted to be home to see the East Greenwich Cross Country team (and my darling sons) make history by defeating Hendricken High School, a team that hasn't lost a meet since 1978." Yes, I did it, and EG won.

December 14, 2007. "Americans read for fun on average 7 minutes per day. We spend hours, at times slumped and drooling, in front of the tube." It's probably down to 4-5 minutes a day.

December 8, 2008. "Normally, I'd politely shrug off a Monday night invitation to sit at a bar drinking beer and eating wings, but I decided to push the envelope. If I hadn't gone, I would have missed the disco version of Gordon Lightfoot's "If You Could Read My Mind." Priceless. It's good to be back."

January 13, 2009.  "Last night I did something I haven't done in 20 months (yes, I count them!). I stood in a classroom at the library and taught an English class to a group of adults whose native languages are not English. The topic for the month of January is health, so I decided to focus on nutrition and diet. I had so much fun, I floated out of the classroom at the end."

April 26, 2009."I'll just give it to you straight. I've relapsed and will have to start all over again. I enter the hospital later this week to get the poison, which will hang from little bags strung from a pole I'll take with me everywhere I go. Not that I'll go far."

April 29, 2009. "Tomorrow I get a menu so I can avoid the tyranny of the meat wad sauced over in mud."

May 2, 2009. "I dreamed that I sneak out of the my room and manage to drive myself home. But I've forgotten my clothes and I feel guilty about letting down my doctor. My bold escape feels childish, and I realize it's no escape at all. Leukemia sounds an all-points bulletin, and I am swiftly rounded up and returned to my cell."

May 14, 2009. "I'm not even going to try to mine this little episode for a hint of humor or a silver lining. It was bad; I got through it; this disease is awful."

Wednesday, August 7, 2013

A Day in New York

When my friend Ronni goes to New York City she does fun things. When I go it's for doctor appointments and medical procedures. I try to thrown in a little fun, such as going to my favorite Korean salon for attention to my hands, feet and shoulders/back, and having lunch with my friend Jeffrey.

I took the bus to Port Authority Monday afternoon. It broke down so we waited for a new one and then ran into rush hour traffic. The C-Train (my old line when I lived in Brooklyn) took me to my friends' house where I enjoyed the best pad Thai I've ever had. Even though I had to be up early, I spent the night enjoying the food and especially the company.

After waking up many times during the night because they were paving the road out front, I dragged myself out of bed at 7 am and left the house by 7:45. It took me an hour to get to MSK, what with changing trains and connecting with a bus. Getting off the bus, I took a tumble. I didn't have so much as a scratch on me. Two kindly women help get me up and on my way.

The PET scan, for which I had to wait an hour, was okay. I was starving and had had no coffee, but what can you do? I saw my doctor late, too. Everything is fine. My fasting blood sugar was 99 so I don't have to worry about diabetes, and we have a plan for prednisone reduction. He wants me to see a neurologist to address falling issues and the fact that sometimes I walk like a drunken sailor. If you see me on the street, keep an eye on me and be prepared to be a Good Samaritan.

I ate a granola bar and picked up a fruit smoothie on the way to my favorite nail salon, where the women fuss over me like a seldom-seen child. It was great. Unfortunately I missed meeting Jeffrey for lunch because it got so late. I trained and bussed back to Monticello where I'd parked my car. It felt as if a week had gone by. Last night I slept for 10 blissful hours. Today my legs are sore from the 2 miles (at least) I'd walked and the 100 stairs I climbed.

Ah, the country life. NYC sure takes the juice out of you.