Monday, December 23, 2013

Aging, Chemicals or Information Overload?

Did you ever put a canister of whipped cream in the microwave? Sounds like something a little rascal might do, or a teenaged boy.

Readers, I am not-so-happily tipping into a new decade next month. I'm grateful I lived this long, but I'm worried about my mind. Where is it?

The other day I made myself hot cocoa topped with whipped cream. Before sitting down to enjoy this treat, I put the can of cream in the microwave. I meant to put it in the fridge. Don't worry, I didn't nuke the can which may have well been an environmental disaster. It was funny, but also disturbing.

I've always felt that our minds fill up with so much goo--especially in the age of the Internet, social networks, et cetera--that it has to decide what to focus on and what to ignore, or at least put in another container. Getting older probably has something to do with. Getting bombarded with chemotherapy and radiation doesn't help.

At least when I looked at my freshly made cocoa, I knew what to do with it.

Tuesday, December 17, 2013

Creams, Insurance, and Snow

It's been snowing since Monday. Fortunately I haven't had any appointments because I cancelled Light Therapy today. Marty took photos of my scary legs on Sunday and I emailed them to my dermatologist in NYC. Our first house had been previously owned by a dermatologist who'd left some of his textbooks behind. They were nauseatingly graphic shots of bad skin conditions. I could be in a book. At least my legs could.

Dr. L said I should stop Light Therapy for now and he'd call in a prescription for yet another cream. After digging out of a snow ditch, Mariel and I drove to the drug store on the way to get new tires put on the car. I didn't even check what was put in my bag.

When I opened the bag at home I sighed. I already have this cream and it didn't work. The drug store has a no-return policy on prescription meds but I thought I'd call. The pharmacist said in this case she'd accept it and return my co-pay. Hooray! I had no room for it anyway in my useless cream bin.

Since I now had the afternoon free, I thought I'd tackle some medical bills. This kind of thinking and doing usually end in despair. After calling a number and getting no answer, I called another one and was transferred to someone else and to someone else and to some ... when I was connected to the right person. Not only was she funny and spoke perfect English, she solved my problems!  I owe the center nothing, saving me several thousand dollars.

I may not have a conventional job, but I've saved a lot of moulah over the years. Persistence pays!

Thursday, December 12, 2013

Shot In the Belly

I used to be a copywriter so I hope you're amused by my headlines.

Fortunately, it was only a Vidaza injection in a new locale. My arms have been rejecting the injection lately due to rigidity. Yesterday, it took two tries for it to enter my body (ouch) and the nurse said she'd experienced this only once before. When I walked in today, she asked me if perhaps my belly would be soft enough to admit a needle.

I've had injections in my arms and thighs. I've had iv's in my extremeties. I've had catheters in my chest
and tubes down my throat. For some reason, getting shot in the belly made me nervous, somewhat protective. I thought of it as a particularly tender spot, although I always "man up" when having a procedure.

It didn't hurt a bit, beyond the initial prick. I picture my softly rounded belly covered with needles, like a reverse porcupine. You better watch out.

Tuesday, December 10, 2013

A Cancer Memoir

Eve Ensler, author of the play "The Vagina Monologues," has written a book about her treatment for uterine cancer. Intertwined in the narrative is the time she is spending in the Republic of Congo interviewing women who've been brutally raped and tortured by soldiers in the ongoing war for the country's natural resources.

In the Body of the World spares no details about Ensler's journey through the cancer rituals so many of us know from our own travails with the disease: denial, terror, anger, and pain. She's graphic in her description of the abscess that nearly kills her and the bodily fluids that leak from her body. All I could think of was, gee I didn't have it so bad. I didn't vomit as much and I only needed morphine a few times. Everyone's cancer treatment is different, and my memory has obviously been affected by all the poison that's been pumped through my body. I admit to feeling that her descriptions became tiresome after a while. Also, she postulates she got may have gotten cancer from her father sexually abusing her as a child. The trauma may have infected her soul and finally overwhelmed her immune system. I do believe acute stress can make us very sick. My doctors said there was no known reason why I developed leukemia. It got me, and I've spent 7+ years on a looking over my shoulder for it lurking in the shadows.

Ensler returns to the Congo cancer-free and is instrumental, in raising the funds to build "The City of Joy," a sanctuary for abused women. These women heal and go back to their villages to help women empower to seek a better life, even if they have suffered jaw-dropping violence. Ensler, by the way, is the founder of V-Day, a global organiation to end violence against women.

The book is short, and I recommend it to those who've been through the battle, as a patient, or a caretaker. Ensler captures the raw physical and emotional pain of Cancerland. I found it cathartic even though my experience was very different.   

Tuesday, December 3, 2013

Good Days, Good Numbers

The holiday season hasn't tired me out so far. I seemed to have had energy to spare, which I definitely tapped into. I used to wish I had a sleep bank to deposit and withdraw sleep. Now I want an energy bank.

I went to my local oncologist today. My numbers are 8.0 white cells, 12.2 hemoglobin, 222 platelets. This is actually within normal range for a normal person. I lost 5 lbs. and all my vitals were perfect.

I started listening to a book on CD to pass the time while driving. Radio here is terrible. And yes, you can be exposed to too much NPR.

Wednesday, November 13, 2013

Wanna Ride?

I got up at 6:15 am to take a coffee shot and walk Buck before setting out for my first appointment of the day with my neurologist. I made an 8 am appointment because this man talks so much that by afternoon, he's backed up by 2 hours. My nerves are fine, although I can't feel my right toe.

On to phototherapy, a 2-minute visit that takes me 15 because I have to undress and then dress. Then it was off to the hospital to get my Vidaza injection. By the time I got home, it was after 11 and I was starving, having forgotten to grab a snack before I set out. I felt much better after an early lunch.

I spent the early afternoon working on financial things, but I was soon in the car again driving through snow flurries for my final appointment of the day, physical therapy. My workout was intense, but my shoulder felt better at the end. I drove home, arriving at sunset. I'd clocked 102 miles for the day.

I know people drive further for medical treatment. I used to when I lived in Rhode Island. Yesterday, though, felt like a marathon. I just had to keep on keeping on.

After nearly falling asleep in my dinner, I went to bed at 8 and slept until 6:30 this morning. Today, I only have one appointment, and that's to get my injection. How did I get myself into this mess?

Saturday, November 9, 2013

On the Road

On Wednesday, a medically free day, I drove to Providence, RI to pick up my daughter who'd spent the past 5 months waitressing on Block Island. I took me 5 hours with a couple of pit stops. I was a bit stiff and my shoulder ached, but I kept telling myself: Mariel will drive home.

My GPS has been misbehaving lately, so I had to have Mariel talk me through the final part of the route. Don't worry, Bluetooth was working. She packed her stuff in the car, and off we went to get her bike, at another location. That done, we went for an early dinner at Chipoltle where we ate enough food for 2 days. Me, at least.

After an inexplicable and unplanned detour, we stopped for gas. I went in to ask the attendant how to get back to Rt. 84. He had no idea, but suggested I ask the FedEx man outside how to go. Mr. FedEx was The Man. Back on the correct route, we arrived in Jville at 9 pm, 12 hours after I'd hit the road.

Buck was happy to see us. Mariel had a snack. I took the road to Sleepy Town. 

Thursday, October 31, 2013

For Four Hours Daily, You Can Be like Me!

Physical Therapy, Light Therapy and a repeat mammogram/ultrasound has kept me pretty busy all week. The hour of PT was intense and I'll be doing that twice a week. Light Therapy takes a minute (for now) but it's a 70 minute round trip drive. PT takes about an hour round trip. Someone suggested I need an occupational therapist to straighten my clawed hand. The Claw is my personal horror movie. No one seems to know why my hand remains permanently frozen in a useless and unnatural position. Can't I just check into a clinic and and have them treat my whole body?

Next week I have to visit the lab for bloodwork, see my oncologist, and go to PT and LT. The week after I'll have my Vidaza shots, plus PT and LT. Of course these are all in different locations. Did you know gas costs money?

Wednesday, October 23, 2013

You Will Always Be Like This

That's what my NYC oncologist Dr. Giralt said in reference to my chronic graft versus host disease. It's the price you pay for keeping leukemia away, blah, blah, blah, he added.

Not all of us successful transplantees pay extra in scarring, monthly shots, excruciating itchiness, the need to wear special lenses, secondary cancers and more. Some do, of course, and I know of at least 3.  Most transplantee can ever give up the war been fought inside us. New battles flare and we must be ready to brandish our swords at any moment. Sorry for that cliched metaphor.

Dr. Lacouture, my NYC dermatologist armed me tooth and nail with new ideas about my appalling skin. One is UVB phototherapy which is similar to a tanning bed but less lethal. He suggested using creams I already have in new ways. It takes a long time tor cream up, but if it relieves the itching it's time well spent.

Monday, October 14, 2013

My Manic/Depressive Moments

Here's what I did today. And I'm not done. I took Buck to the park. Went to a very strenuous yoga class. Trimmed back the lilac bushes Marty transplanted. Lunched. Started sifting through my To File tray and arranged papers in neat piles which I plan to file later or tomorrow. Read by the brook for 45 minutes. Vacuumed two rooms. Sat down to write this blog.

I feel a little tired but it's a physical sensation that comes from doing things. The bad kind of tired is when you feel as though you're dragging around the weight of the world which is how your mind feels, too. This was how I felt from the moment I woke up yesterday until we left to celebrate my son's birthday. Even though my husband and son were around all day, I retreated into the dark place where everything is fraught with anxiety and numbness. We went on to have a very nice evening. I was thankful my funk had lifted.

Now, 24 hours later (minus 9 hours of sleep time), I still feel energized. I'm going to attack those sneering piles of mostly medical docs, receipts and bills and get organized for tomorrow when I might be able to make some sense out of the bills.

I can blame my Ms. Jekyl/Ms. Hyde flip flops on the bossa nova, but alas, I have to blame the prednisone weaning.

Wednesday, October 9, 2013

A Dead Horse

I was so disgusted with myself for constantly complaining about shoulder pain I decided to go to a chiropractor. My neurologist couldn't figure out how to treat me, and suggested I see an orthopedist. "He's likely to inject me, right?" "Possibly," he said, "but tell him to call me first." "I'm not going," I said adamantly. "How do you feel about chiropractors?" "I know nothing about that," he claimed.

I immediately made an appointment to see a highly-recommended chiropractor not too far away. I saw her Monday, when she identified a problem in my cervical spine and a misalignment in my lower jaw. I'll see her again today, and continue for a while.

With enough doctors to staff a small medical clinic, none seem able to address some of my problems, the ones that hurt the most. I'm going where the pain isn't.

Wednesday, October 2, 2013

Tick Time

Here in the woods, ticks are as common as mouse droppings, but are a more plentiful and pernicious pest. I just picked a dead little bugger off my stomach while in the shower. I thought it was a mere scab, which on my body are as common as, as ... a simile eludes me.

I looked up tick varieties/photos/diseases online. Mine doesn't look like a deer tick; it's way too big. It wasn't engorged, because it was dead, probably from sucking my questionable blood.

I'll call my internist and ask her what I should do. Just add one more medical issue to the list.

Monday, September 30, 2013

For Post-Menopausal Women Only ...

Ha, you couldn't resist, could you? I went to the Women's Radiology Center today in Monticello for a routine mammogram and a bone density scan. I scored average on the bone test (I hate being average, but glad I don't have osteoporosis, merely osteopenia). The boob screening went okay. New technology allows you to see the images immediately, but I have to get my "priors" for comparison.

Getting my last mammogram is turning out to be tricky. I couldn't remember where I had them done, so called my internist in NYC since she had ordered them. Her receptionist said she didn't know which I thought was strange since Dr. F. had called me with the results. She'd wanted me to go to NYU but I remember going to Beth Israel Radiology because I'd been there the year before, AND I remember being super-annoyed because they made me wait for over an hour wearing a thin hospital gown. For Beth Israel, I have to fill out a form, fax it to them and then wait up to 10 days to have the results sent to my doctor here.

It's never easy. And I'm going to discuss with my oncologist whether I should be getting these exams yearly because radiology sounds like radiation and I don't need more than is medically necessary.

Tuesday, September 24, 2013

AARP, Medicare and Other Signs of Deterioration

When I used to receive the AARP card in the mail in the mail, I was annoyed and recycled it without opening. Everyone is eligible to join at age 50, but I hate the hounding and the assumption that I want to be included in the likes and dislikes of the boomer generation.

But I joined to see if it's cheaper to use my husband's new health plan at work, or go on Medicare for my benefits and see how it compares with his "employee + kids" plan. Can you imagine how many brain cells I used on this? How much time?

I'm happy to say that I found a clear-cut answer. Although it was exhausting, I did the math and found the "answer."

Ironically, my husband knows Excel really well, and I have only a basic knowledge. As time goes by, however, and we all get older and qualify for Medicare, we may have to learn how to do these calculations with digital apps. Who knows?

I just hope my future deterioration (and everyone elses') can be approached without fear and with adequate coverage.

Friday, September 20, 2013

Prednisone Taper Redux

I've been on prednisone for a long time. I've been on 20 mg. for about 2 years.

The first taper was successful but ultimately too low and I had to increase it again. The last attempt at a taper back in February ended in disaster, with me suffering acute withdrawal within a week. My doctor told me to go back up. See-saw Margery Daw. (I had to check the spelling of that.)

Today I began a 5-mg. taper. Within a week, I might have side effects but I hope it won't crush me. My doc has consistently said I will probably hold at 10 and continue that for life.

I went to a local salon today and got a nice haircut with some highlights. I still have small bruises under my eyes, but I think I look much-improved. Since I'm so vain, my mental state is as well.

Tuesday, September 17, 2013

Retrospective Part V

This is the final installment of my retrospective. Onward.

June 29, 2013: I finished my monthly injections of Vidaza yesterday. It's no big deal except my oncologist recommends I get them for life. Vidaza without parole. I take 22 pills each day. I take the morning pills after breakfast. It's like having an additional course.

And then it hits you. You survived but it never goes away.

August 22, 2013: 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.

Taking a Chance

This is my Vidaza week, five daily injections with a dose of Zofran to prevent nausea. The problem with Zofran is that it has side effects, like most any drug do. The most bothersome side effect for me is constipation. Who needs that? I have enough problems.

So I requested that I skip the drug and see how it goes. Guess what? No nausea.

I saw my neurologist yesterday for a follow-up and he was pleased with my "progress." My nerves are okay, but my right hand, arm and shoulder have a way to go before they return to normal. I've been doing some exercises and hope to return to yoga on Saturday, in my opinion, the best way to straighten myself out.

Tuesday, September 10, 2013

Leukemia Hysteria

Anyone out there who's had leukemia has triggers that make you feel certain it's back. I've relapsed 3 times so I'm familiar with the anxiety that accompanies it.

Since my fall 3 weeks ago I've been struggling with a swollen arm and a craw for a hand, for which I've been taking a strong antibiotic. My shoulder pain comes and goes but who knows if it's related.

When I was first diagnosed with AML I went to the doctor for a swollen finger. Now my arm is swollen. Where would our mind jump to?

I went to my local oncologist today. Before my blood work came in, he was discussing getting a bone marrow biopsy from Dr. Giralt, my oncologist in NYC asap. My blood work took over an hour. I meditated as best I could, but I was prepared for the worst.

Dr. Sethi finally waltzed in as I was preparing my final goodbyes and said my blood work was great.

Another mental bullet dodged.

Tuesday, September 3, 2013

Eat, Love, Massage

First, thank you for your uplifting comments. 2 might have been lost in the Cloud; all were wonderful.

Even though I'm still one-handed, I've managed to eat quite well. Marty and I went to the Cabin for delicious burgers Friday night after I picked him up from the bus station. We had some kind of comfort food Saturday night, although I can't remember what it was, perhaps a large downy quilt. Doug brought dinner to cook Sunday and Harry joined us for the meal, which included grilled steak, corn on the cob, couscous and chickpea salad, Asian coleslaw and homemade chocolate chip cookies for dessert. That's enough about food.

Love is what I want to talk about. For most of the last 2 weeks I've been here by myself, but I was not alone. Friends called to check up on me; many offered to come over and help. I had great conversations with my kids and sister-in-law Esther. The out-pouring of support reminded me of my leukemia days.

My massage therapist, whom I've been seeing for years and knows my body better than anyone, worked on me Friday and again on Monday. Yes, she came in on Labor Day to knock some good pain into my shoulder.

I'm healing, albeit slowly. My face is still scary but the cellulitis is getting better. 

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.

Wednesday, July 31, 2013

Sewing for Displeasure

Sewing used to be a relaxing and rewarding pursuit for me. I bought my own Singer machine when I was 16. I've sewn clothing, pillows, curtains and whatnot. I still have the machine, but it sits upstairs in a small gray room, abandoned and lonely.

Since my cgvh has kicked in, I've been unable to sew at a level that pleases me. Curtains, measured, cut and pinned, are buried in a bag somewhere. I put off small sewing jobs until the pile grows so large I want to weep. It's my fingers. They are no longer nimble, and I have trouble feeling the tips, not a good situation for hand-sewing. It's also my eyes. I can only sew without my PROSE lenses because I'm so nearsighted. This means my eyes are desert-dry and somewhat painful. They feel fine with my eyes closed, but I'm not that good at sewing.

Today I decided to mend a bra and sew hook-eye closures on a skirt whose zipper broke a while ago. It felt like I was under the influence of powerful drugs. Holding a needle, threading it, working with tiny bits of metal. It was frustrating but I did it, without sewing anything to myself.

I hope it holds.

Friday, July 26, 2013

Secondary Cancers

As I and my fellow leukemia vets know, having had a variety of poisons pumped into our bodies ( think "Love Canal") puts us at a 30% higher risk of developing secondary cancers. We have to be checked, re-checked and checked again all the time. It costs a lot, but we live. And we add to the economy through job creation.  

On my list is a Pet Scan, scheduled for early August plus a mammogram, a colonoscopy and a skin evaluation. In the Pet Scan, which I have yearly, they check for tumors throughout my trunk. I've yet to have had my head checked. I'm pretty sure it's empty.

Thursday, July 18, 2013

Block Island Hairless and Hairy

Block Island is one of the most beautiful places on earth. It's an island off the coast of Rhode Island, and it's a place I've visited many times. Four years ago, my husband and I went for and overnight a week before my second transplant. Earlier this week, we returned for two nights. This time, I had hair, at least on my head. The rest of my body hair has never grown back, which is a plus.

We arrived at the ferry early and walked around Pt. Judith. What I appreciate about this town is that the boats coming in and going out include real fishing boats. You can watch them haul in their catch while you eat at a seaside restaurant, outside on the deck.

Ferrying to Block Island takes 55 minutes on the car ferry. The High Speed ferry takes half the time but is more expensive. The view of downtown as the ferry pulls in has remained the same since we first went there in 1986. It's probably looked the same for 100 years. We stayed at the Harborside Hotel. Considering the heat, we were fortunate to have a room with air conditioning.

My daughter is working on BI for the summer, making lots of dough. She treated me to a yoga class. I did a lot of walking. Three times I leaned back in my chair and said, "I feel so good, so happy."

Four years has made a huge difference in my life. From fear and anxiety to a feeling of well-being. It was worth waiting for.

Wednesday, July 10, 2013

I Ran, I Sweated, I Conquered

Some of you may know that I ran the NYC Marathon In November, 2011 in memory of Dori Brown. I trained with the Leukemia & Lymphoma Society's Team in Training, and all went well until sometime in late October when I felt I was running in lead boots. The Marathon didn't go well for me. I tripped and fell at mile 2, and I only ran 17.5 of the 26.2 miles. I retired from running shortly thereafter.

Today, for the first time in 20 months, and with the support and advice of my running sons Mark and Harry, I went for a jog. I couldn't even find my running shoes, and I wasn't sure if I had a pair of running shorts I could pull up over my hips since I have a 5-lb. mass of fibrous tissue strapped across my waist. In case you're curious, it's somehow gvh-related but I forget what caused it. Anyway, the gear issue worked out, and I sort-of-ran about half a mile on flat terrain. I had no problems with breathing, but I still had the lead-boot thing going. My muscles are so weak, probably due to long-term prednisone use.

I'm determined to increase the length of my run. It's challenging to do something you used to love, and now seems nearly impossible.

I want to give a shout-out to my friend Ann who's facing new challenges with her gvh, nearly 5 years after her transplant.

Monday, July 1, 2013

Doc Says No to Lowering Prednisone

After waiting 10 days for my doctor to get back to me about a prednisone taper, one of his nurses called today and said he said no; he'd rather not rock the boat.

I'm disappointed but I feel he has wide experience with this and I only have mine. Glad I didn't buy that pill cutter today.

Saturday, June 29, 2013

And Then It Hits You

I finished my monthly injections of Vidaza yesterday. It's no big deal except my oncologist recommends I get them for life. Vidaza without parole.

I take 22 pills each day. I take the morning pills after breakfast. It's like having an additional course.

Which reminds me. I called my oncologist last week to see what he thought about tapering from 20 to 15 mg of prednisone. He hasn't called me back yet, so I'm thinking about just doing it.

And then it hits you. You survived but it never goes away.

Wednesday, June 19, 2013

Feeling Groovy

I live 15 minutes from the original Woodstock site, in Bethel, New York. The museum reflects this country's musical, cultural and political mood at the time. I was too young to go to the festival, but the music infected my family in deep ways. Even my kids love the tunes from that time.

The reason I'm feeling so groovy is that my psyche is strong, my body's getting stronger and the weather is fine. I went to my local oncologist yesterday. My counts are great, and I've been approved to receive Vidaza shots next week. Yay.

Life I love you ...

Friday, June 14, 2013

More Traveling on My Own

I went to Eugene, Oregon last week to see my son run in the NCAA Championships for Track and Field. You can read more about the details on my other blog

The first and last days, where I had to fly and switch planes, dragging my luggage along with me, were the most challenging. When I got off the plane in Newark, NJ, after a red-eye from Denver, I was a zombie. I then took a bus to Port Authority in NYC and subwayed to my friend's house in Brooklyn where I finally had a cup of coffee.

After showering and changing into fresh clothes, I went to an appointment at my dermatologist's. He said my skin looked much better, and he gave me a prescription for a new anti-itch cream. It's too soon to say whether it works or will work long-term. The best part of the exam revealed no cancer. I didn't expect there to be any, but like many of you in this boat, it's always a relief to hear those words.

Tuesday, June 4, 2013

PT, Yoga and Massage

Knock on wood, I've been doing really well lately. I've lost weight and have better balance and flexibility than I did a year ago. I credit this to physical therapy and yoga. A massage helps my skin and soothes my muscles. Yesterday, my therapist said my muscles overall seem less tight.

My number one complaint is still skin itchiness. I'm taking medication and have tried every expensive lotion money can buy. I see my dermatologist next week. We'll see what he says.

More exciting news: I can now get my hair into a ponytail with a little bit of help. I'm not that flexible.

Wednesday, May 29, 2013

Numbers Looking Good

When my cbc is good, I'm good. It means I can get my series of Vidaza shots. Thanks a lot.

I spent the past week on the road again, a trip that took us to NYC, Bethesda, MD, Asheboro, NC, Great Falls, VA, Gaithersburg, MD, back to NYC and then home. Lots of fun and adventure. Read about it on

Saturday, May 18, 2013

There Is Hope

I'm guilty as charged when it comes to laundry-listing my trials and tribulations post-transplant. I still have plenty to complain about, but what I'm about to show you is that there is fun, too.

On Monday, I set out for Rhode Island to visit my friends there. I hate to drive, but drive I did, all by myself. My support staff, Marty and Buck, stayed home. I stayed with Patty and Reinhardt Sidor in East Greenwich. He's a Master gardener, and plants every inch of his property with trees and shrubs and perennials. He gave me cuttings to bring home. Patty and Reinhardt love to cook, so I was well-fed in my time there.

Tuesday, I met Jamie Blair for lunch at a a harborside restaurant where I had wonderful lobster bisque. Wednesday night, Claudia Smith took me to Matunick on the ocean, where we shared raw oysters and other fish delights. I met Marcia Gold for lunch Thursday in North Smithfield, and then went to stay at Sue Schweikart's house back in EG.

In between the visiting and eating, I shopped. I'm really not supposed to spend money, but all my purchases were necessary, except for the shoes, which were on sale. I decided to splurge on make-up to disguise my gvh blotches and carvings on my face. I had a makeover and it looked really great. I can almost recreate the effect myself, which is a miracle.

After stopping at Allie's Donuts to buy the best crullers in the world, I headed for Jeffersonville. I had to stop at UPS where a script for Ambien had been sitting for a week. Out in the sticks, UPS is only open Monday-Friday from 4 to 6. They tried delivering it, but my doctor had put my P.O. Box on it so they couldn't. I managed to ration the pills I had. Last night's sleep, in my own bed, with a full dose of the drug was heavenly.

So chin up. There are bad days and good days. Sometimes, lots of good days in a row.

Thursday, May 9, 2013

Report Card

After a whirlwind five-day trip, I'm home and feeling great. My oncologist doesn't want to see me for 3 months and I don't want to see him.

I watched my son compete in the Ivy League Championships at Princeton, NJ. He goes on to the East Regionals in North Carolina in 2 weeks. We stayed with my sister and brother-in-law Saturday night and went for Mexican food, it being Cuatro de Mayo. I love mole! Sunday night we had dinner with Roxi and Mike and their daughter Erin at an Italian restaurant in Park Slope, Brooklyn. That night and for the next 3 nights we stayed with Sandy and Dianne in Fort Greene, Brooklyn, our old and remarkably changed neighborhood.

On Monday we rested a bit. I walked with Di to Target. Marty got a Not-Ray's pizza for lunch. Sandy made dinner. On Tuesday we went to MSK for my bloodwork, inoculation (for meningitis,) and to see the doc who pronounced me looking better than in a long time. I even lost 8 lbs! To celebrate all the good news I went to my Korean spa and had the works: manicure, pedicure and a 20-minute massage.

Tuesday night I made Shrimp Pad Thai for dinner. We'd invited old friends Peter and Mecca at the last minute and they joined us for a lovely evening. The topic of soft shell crabs came up and Peter offered to make them for lunch the next day before we headed out of town. He couldn't get crabs but made a lovely fish stew with green salad and white wine. I slept on the car ride home. Must have been the wine.

Thursday, May 2, 2013

The Overhaul Begins

I've survived the past month, and although I'm not 100% (who is?), I'm slowly chipping away at some of my issues.

Yesterday I went to physical therapy, had my Vidaza injection at the hospital, and saw a therapist for the first time. I did all the driving!

In the afternoon, I tried on clothing to see if it fit (a demoralizing experience because things I wore a year ago don't fit, plus it takes me forever to clothe myself). I hauled it off to the consignment shop and while I was there, bought a white sleeveless shirt, two skirts and a pair of chinos. I went home and transplanted most of my houseplants (outside, where the weather has been glorious). Then I finally finished the book I've been reading and made dinner.

I managed to stay up until 10:30, which is late for me. As my daughter says, woot!

Monday, April 29, 2013

Shin Splints

With my body finally healing from its digestive problems (all tests normal), I developed a new and annoying issue in my left leg, shin splints. As a former runner, I know all about this malady, which is painful and annoying. To develop it as a broken-down virtual zombie goes beyond irony and, I fear, slips dangerously into hypochondria.

I bought a cane to take pressure off my left leg, and to help my balance, especially as I was attending the Penn Relays in a huge stadium this weekend with lots of concrete stairs. Using a cane has its benefits. We got better seats, lower down and within spitting distance of where the runners entered the track. My leg actually feels a little bit better now.

Today I start another round of Vidaza injections. The true highlight of my day will be a therapeutic massage. It's the only thing that truly makes my skin feel better, and loosens up my tight muscles. That insurance doesn't cover it is another story. 

Friday, April 19, 2013

You've Got to Suffer If You Want to Sing the Blues

We all get our share of the blues from time to time. Depending on our coping mechanisms, it's usually a short-term rough patch from which we arise with little wear and tear on body or spirit.

In my 7-year battle with leukemia, I've certainly had my down moments. When I first relapsed, my doctor prescribed an anti-depressant which made me comatose. After 4 doses, I quit. I didn't need to be paranoid about a medicine that was supposed to give me a lift, not knock me into the gutter.

Things I've found depressing: not being with my kids when I was in the hospital; being tethered to wires; seeing Spring unfold outside my window but unable to smell it. I won't even go into the side effects of chemo because there are drugs for that.

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.

Four weeks ago, I was felled by a stomach virus that would normally have passed in a few days. Because my immune system is compromised, I still suffer from it. You're probably familiar with the feeling: you want to die, but you don't. I wail, I whimper, I want to be comatose. Two days ago I was tested for close to 10 bacterium/parasites. I should know the results soon.

My situation is compounded by financial worries and health insurance Catch-22s. I feel like a burden to my family, although I know that's ridiculous. I'm just trying to be honest here. Today I can't be flip.

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.

Friday, April 12, 2013

Can You Spell Gastroenterologist?

Having always had a lead-lined stomach, the few times my digestive system has failed me are memorable. These episodes, like most of their sort, were nasty, brutish and short. Not this one.

My oncologist was certain I had c-diff, a toxic bacteria that effects immune-compromised people, as well as the very young and the elderly. But it's not c-diff. I now have to see a gastroenterologist, a specialist who deals with the digestive tract.

I'm weak, disgusted and tired of feeling sick. I keep hydrated as best as I can. I'm waiting for a call back from a doctor's office, which now looks like I won't get to schedule an appointment until next week. I've lost a few lbs, which I can afford to lose. I'm drinking Gatorade and taking plenty of potassium. I have an appetite, but eat small portions.

The problem for me is that I'm unmotivated to do much more than watch endless episodes of Law & Order. I first became addicted to the show in the hospital after my 2nd relapse. I realize I shouldn't be so hard on myself, but I'm used to a certain level of achievement each day. Yesterday, I made a banana bread.

I think I'll take a nap.

Saturday, April 6, 2013

Hospital Table Pushes Me Over The Edge

My day wasn't going so well anyway. After suffering through a 48-hour intestinal flu, my immune system took a turn for the worst. I didn't eat for 3 days, but once I did, I had uncontrollable diarrhea. I won't try to describe it--who'd want to hear it? After four ugly days I think I'm out of the woods, which is where Marty should have kept me during the ordeal.

I was at the hospital for my monthly Vidaza infusions. By mid-week, the doctor decided I didn't need that on top of my other agonies, and discontinued this series. They gave me saline every day with potassium since that was leaving my body with everything else. Marty went to the cafeteria to get me something to eat. The nurse brought over a narrow table on wheels that can be adjusted for height and used when patients are in bed or sitting in a chair. I took one look at that table and burst into tears. "Are you in pain, honey, asked the nurse?" I chokingly tried to explain that the table brought back memories of my hospital days. It was a trigger that opened the hole into which I'd stuffed mostly negative thoughts about my situation.

Today I walked to the library and checked out the new Joyce Carol Oates book. I'm feeling weak, and I still don't trust my lower digestive system to behave itself, but I'm hoping I've seen the end of it.

Sunday, March 24, 2013

7th Anniversary of Diagnosis

On March 24, 2006, I received the worst news of my life. It had been an average Friday. Shortly after I arrived home, the phone rang. It was my doctor telling me I had leukemia.

Are you sure? I feel fine. Yes, I'm positive. A hematoligist/oncologist I recommend will call you as soon as we get off the line.

I'd gone to the doctor two days earlier complaining of a swollen finger. Lyme disease? Rheumatoid arthritis? Blood tests were done, including a CBC. It was the CBC that showed I had leukemia.

The new doctor called and in 20 minutes explained everything I needed to know right then about the disease. My husband walked in during the call and I told him I had leukemia. His face went from disbelief to shock in a second or two. I told the doctor I'd meet him the next day at the hospital.

There were plans to unmake, relatives, friends and colleagues to call. Then I had to tell my kids. Try being a scared, tearful mother putting a relatively positive spin on leukemia. They too were shocked and terrified. They didn't know what to ask or expect, just like me.

In the next 7 years, I would have 10 doses of chemo, 7 of total body radiation, 2 stem cell transplants, 75 units of blood, significant graft versus host disease wherein my donor attacks my body, 15 doses of targeted radiation to destroy a patch of leukemia on my skin, and monthly low dose anti-cancer injections. The injections are on-going for the foreseeable future.

I'm lucky to be alive, although some days don't feel like it. I have a 30% chance of surviving for 5 years post-transplant. Three and a half years down, one and a half to go.

Tuesday, March 19, 2013

I Painted a Room!

I learned how to paint when I was 16. My father owned an old motel, and the painting was endless both inside and out. This skill would be very useful in the future. In all our houses, except for the ones in Costa Rica), I did all the interior painting. I had help sometimes, but usually I just pumped up the music and rollered myself away.

What does this have to do with leukemia? For one thing, I haven't painted since my diagnosis in 2006, mainly because nothing needed painting. When we bought our house in the Catskills, someone came in to paint the bedrooms pre-furniture, before we moved in. Now that we're living here full-time, we decided to add some color to the back room that overlooks the brook. There are places for stark white rooms, but this one cried out for color.

The first problem is that, as our living room, it has the most furniture in it. Plus it's one of the smaller rooms in the house. First we had to remove the smaller items, and then stack the rest in the middle of the room. Fortunately, the ceiling didn't need painting, the hardest part of painting a room. There's actually very little wall space in the room, which has 3 windows and 3 doorways. That also meant there was a lot of taping around the natural wood frames and moulding, and a lot of painting that had to be done with a brush.

Because my ligaments and tendons are so tight due to gvh, and my muscles are weak, it's a challenge for me to walk, let alone do physical labor. Marty isn't crazy about painting, and the room didn't really need it done, so I felt I had to do my share of the work. After going to yoga Friday and Saturday, I thought, how will my thighs be able to hold me as I rose up and down to paint the trim and roller the walls? My arms are also weak. I surprised myself by working 6 hours on Sunday and 4 yesterday. It's all done except for putting everything back in the room.

A couple of weeks ago, I couldn't have withstood this kind of physical labor. Just re-upping the prednisone by 5 mg has made me feel like myself again, whoever that is.

Wednesday, March 13, 2013


I'm in NYC on a doctor tour. On Monday I saw my dermatologist. He was concerned with the path my skin was taking (basically crumbling) and how much pain I was in, especially at night. I have a new cream and a new lotion, plus a pill I take at night called Doxepin. It's too soon to see if the cream and lotion are working, but the pill puts me in la-la land so I have no trouble sleeping. That's good news.

I saw my oncologist Tuesday and he gave me a big hug. We discussed all my concerns and he offered a panoply of ideas to ameliorate my gvh skin woes, from the inside. Some of the treatments would necessitate week-long stays in NYC, which I don't want to do. Plus, I'd have to get a port because my veins are worthless. The idea of a port 3.5 years after my transplant makes me feel sad and defeated. I know it shouldn't, but it does.

We decided to take the simplest measure first, take me off Gleevec and put me back on my old friend Sirolimus aka Rapamune. I'll continue with Cellcept, another immune suppressant.

Thursday, February 28, 2013

Back Up to 20

I finally called my oncologist in NYC today and he told me to go back up to 20mg of prednisone. When I see him in 10 days, we'll discuss other treatment options.

Wednesday, February 27, 2013

Positive Spin

I'm sitting here trying to put a positive spin on my current condition. I got up this morning. Had my usual cup of joe, strong and black. Checked email, read the on-line New York Times. Was happy to see my disability payment had been posted. The only negative is that I want to rip my skin off, a little self-flaying to begin the day.

The local oncologist said yesterday that he'd never seen a worse version of skin gvh. This was somehow comforting. It meant I wasn't being a whining baby unable to manage pain and suffering. He didn't have any new ideas and I didn't expect him to. I'm seeing my dermatologist and oncologist in NYC in 2 weeks.

The good news is that my blood counts are normal. Alk-phos liver enzymes went up a bit but that could be due to increased gvh in general.

I'm going to make some oatmeal and coat my skin with it.

Monday, February 18, 2013

This Is What Withdrawl Feels Like

I weep as I write this. Fortunately, I have no tears so I'm not drowning my computer.

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.

I should be looking forward to today but I don't. I have yoga, followed by a massage. Could it get any better?

I hope so.

Wednesday, February 13, 2013

Sick Day

I spent most of yesterday sleeping. This rarely happens to me, even when I was being assaulted by chemicals and radiation.

After taking my morning thyroid and lasix, I popped 500 mg of tylenol to ease the throbbing in my left side, a pain I've had on and off since Saturday afternoon. At the time, I blamed the pain on indigestion from a gryo I'd had for lunch. Three days later, I still had the pain on and off. I decided to diagnose myself using the internet. I tried to get an appointment at the recommended local internist but he's been on vacation since last week. Anyway, I discovered that the only organ on the right side is the gall bladder. Could I have a gall stone?

Aside from pain (I'll rank it a 6), I've had nausea and vomiting which could be leftover symptoms from the Vidaza I had last week. That doesn't usually happen to me, and I've had the injections five times over 5 months. The nausea became so extreme after a light lunch and some juice, I had to take an ativan. I slept a total of  6 or 7 daylight hours. When I was awake, I read a little and watched TV. Marty woke me for dinner, Chinese food, which I managed to eat. Soup and lo mein seemed to be what I wanted. I didn't eat a lot, but I felt better and didn't get nauseous. I took my handful of pills and they stayed in place. I watched TV with Marty including the Westminster Dog Show. I don't even know what time I went to bed, but I fell asleep right away, a rarity. Of course I took zolpidem but I have to take that or I won't sleep a wink.  

Regretfully, we were supposed to take Mark out to dinner for his birthday. Marty was wise enough to cancel this. We'll do it next week. The important thing is, I woke up this morning at 7:00 and felt pretty good. In the 2 hours I've been up I've had coffee, read email and the New York Times. I made granola, which is almost done, and I look forward to having hot oatmeal for breakfast. So far, so good.

Saturday, February 9, 2013

A Normal Medical Problem

Add podiatrist to my list of specialty doctors. The second toe on my right foot has been bothering me for weeks. It looked calloused on top and the nail looked funky. My problem is I can't see the back of the toe due to inflexibility. Marty looked at it and said there was a tiny blood blister that seemed to be fading into a bruise. My local oncologist said I should see a podiatrist.

It turns out that I have a mild case of hammer toe, meaning that when my foot strikes the ground, the top joint is bending just enough for the toe to hit the ground in such a way that I'm injuring it with each step. In my case, I only had a small sore, which the doctor carved out of my toe. At one point, he asked if he was hurting me and I said no, I have neuropathy. No wonder you're not feeling this. He carved a bit more until I started whimpering slightly. He bandaged up the hole and put a device on the toe which will help keep it in the right place.

To have a minor medical issue unrelated to leukemia was not just a relief but a sign of normalcy. I didn't exactly put on my dancing shoes, but I was mildly happy, albeit resigned to the continuation of middle age meltdown. 

Wednesday, January 30, 2013

Bag Balm to the Rescue

I went to my Catskill oncologist today to have my blood work reviewed (CBC normal) and set up an appointment for next week's round of Vidaza shots. I showed him how awful my skin looks. He repeated what my NYC oncologist says: your new immune system is fighting you and the leukemia. The fight has ramped up considerably in the past 6 months. I guess this means my leukemic cells are trying to reproduce and mount a battle.

I've tried every cream and lotion available, retail and prescription. None of them work for long. My husband suggested I try Bag Balm, an ointment originally used by farmers to soothe overworked cow nipples. It's been marketed for human use for a long time (we used to use it years ago on our hands), but isn't easy to find. After trying several drug stores, my husband found it at Agway, an animal feed store where we buy our dog's food.

I applied the Bag Balm liberally last night before bed. It's a bit greasy since it has a petroleum lanolin base. The only other ingredient is 3% B Hydroxy Quinoline Sulfate. For the first time in weeks, I wasn't itchy as soon as I hit the sheets. My hands, which are covered with small white non-itch but annoying bumps, seemed a little better today. I did a second hand treatment before I went out to do errands, keeping thin gloves on so I wouldn't leave grease marks on my travels.

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.

Friday, January 25, 2013

3 Years 5 Months

Graft versus host disease is a tricky disease. My second transplant was nearly three and a half years ago. The first signs of cgvh showed up about nine months later. It was no big deal. As time passed, the symptoms increased in number and intensity. I've been treated by three oncologists, all directors of the bone marrow transplant units at their centers. I feel well-cared for.

I used to think that after five years post-transplant, I'd be "cured." My doctor in NYC has begun to hint that that might not be the case. I may be on steroids for life, although I'm going to try a taper next week. I thought the Vidaza injections would be short-term, but now he says I'll be doing them forever, or as long as I can tolerate them, which I seem to be.

It seems that my leukemia cells, which still lurk in my body, are crafty buggers, constantly looking for ways to replicate and kill me. I have to stay ever-vigilant. I just hope some of my symptoms will go away or at least lessen in intensity. If the itching would stop, if I could bend over to trim my toenails, if the edema would go away, I'd feel better day to day.

In the meantime, I lather on the lotions, go to yoga and take Lasix. I'm researching natural ways to get rid of the water, and welcome any ideas.

Thursday, January 17, 2013

Unlight My Fire

I want to crawl out of my skin. Either that or immerse myself in a vat of jellied liquid, as bad as that sounds.

My skin, especially on my arms and lower legs is so flaky, I leave a trail behind me. It's ugly but that's not the problem. The problem is it itches so much I want to be sedated. I have so little skin that it actually hurts when it touches my clothes. Yesterday, after doing a few paint touch-ups necessitated by the move, I took a long bubble bath. It felt really good. I lathered myself with Sarna lotion and felt okay the rest of the day.

The fire ants arrive just after sundown. A nibble here, a nibble there. I apply more lotion. It helps for an hour or so. Doing something physical to take my mind off the itch, sometimes helps. Sitting and reading is not an option.

Before 9 pm, I applied more lotion and put my pajamas on. I had taken my meds at 8 pm, which include a strong drug that's supposed to calm the itch. It seems to be losing effectiveness. I wanted to watch a show I like called Criminal Minds. This episode was going to feature Reid, the genius profiler. I stretched out on the couch and tried to ignore the maddening sensation of wanting to scratch myself. At the first commercial, I called it quits. I took my Ambien and eventually reached the state where there's no itching--sleep, glorious sleep.

Wednesday, January 9, 2013


Thank you Mr. Vonnegut for coining a simple phrase that connotes a frustrating and inescapable circle of circumstances that make you consider going on a rampage.

I take two medications that have recently been deemed "special" (make that expensive). I received a letter announcing this two weeks ago. I called to set up the new system. Monday I got a robot call from CuraScripts saying everything was set up but they were awaiting another piece of information. I didn't call back the number given because I was having my Vidaza shot. Tuesday I got another robot call but was able to call back. A human told me that they were still waiting for the doctor's prescription so they could send me the meds. I called my doctor, and yes, they had received the rx  request Monday and faxed it back right away. I called CuraScripts again and they said to call back later because perhaps it wasn't scanned into the system yet.

The problem is, I'm about to run out of an immune suppressant drug which I wouldn't want to do for obvious reasons. I called my local pharmacy and they said they couldn't fill it because the insurance company wouldn't pay for it. Had I looked in the mirror right then, I'm sure I resembled Munch's "The Scream." The pharmacy suggested I call my insurance company, which I did. After explaining the problem to two representatives, I was granted a one-time dispensation to get the drug at my local pharmacy. Hallelujah.

Talk about jumping through hoops. I'm awaiting reimbursement from the insurance company on claims I submitted in October. Both came back with "problems." I wonder how much profit the insurance companies make from members who just give up. It's only because I'm relentless and healthy enough to pursue these battles. Don't I have enough battles to fight?

And so it goes. 

Sunday, January 6, 2013

Always Something

My latest issue is that I need to have a back molar pulled. It's sitting in my mouth like an empty cup waiting to be filled with hot pain. The dentist said he'd never seen anything like it, in that the root was broken off and I felt nothing. Let's hope it stays that way until my appointment on Thursday.

The dentist also found a blood blister on my gum and seemed concerned about it. My mind immediately flashed to leukemia cutis. He said if it didn't go away in 3 days I should be concerned. It was gone the next day, but not without me contemplating mortality for awhile.

It would be easy to blame my tooth problems (I had another molar pulled a year ago) with my treatment and medication over the past almost 7 years. Up until now, I've never had a tooth extracted; I've never had root canal. Maybe it's just age. Most people my age begin the crumbling process by now.

Tomorrow I start round 4 of Vidaza shots. My counts are all good. I'm still kicking.

Tuesday, January 1, 2013

PJ Wears PJs to Celebrate the New Year

We went to a party last night where we, in our fifties, were among the youngins. We were the poorest people there, most of the party-goers owning at least 2 houses and their own companies. Hors d'oevres and dessert, as well as wine was served in vast quantities. The men talked business and politics; the women chatted about children and tennis. Gun control was a topic I involved myself in, but since we all had the same opinion, the conversation was short.

My son Harry is spending the next semester in Copenhagen. A Danish couple we've known for a long time was at the party and offered to help Harry in any way through their many contacts in the city and around the country. When my daughter spent a semester in Quito, Ecuador, we knew the Ambassador there and suggested she contact her and her husband. Her response was: "Can't I go anywhere where you don't know someone?" Guess not.

The party broke up around 12:30; I was in bed by one. The guys took the dogs and went cross-country skiing a little while ago. I'm still in my pajamas, which I'm considering wearing all day, even though we're driving back to our house later. What's wrong with starting the New Year as a sloth?