January 23, 1954 - June 28, 2014

This is the final entry in THE PLOG.  But that doesn't mean it's the last word.  Patricia Jempty, the author who always signed her posts PJ, passed away - peacefully, in her sleep, in hospice - in the early hours of June 28 in Brooklyn, NY.  In the days before, she had been embraced by her friends and her family - her husband Marty, her children Mariel, Mark and Harry.

Her friend Ronni Gordon wrote a lovely tribute to Patricia on her own blog: "She was feisty, funny, smart and compassionate." (You can read it in its entirety here:  http;//runerwrites.blogspot.com/2014/06/on-losing-friend-to-leukemia.html.)  After she fell down at 2 a.m. earlier this year, Patricia assessed the situation thusly: "Lesson learned: no more seltzer in the night."

Patricia had a thing for the color orange long before Netflix decreed it cool; she also liked shoes, and earrings that matched her clothes.  But it is her love for Marty, Mariel, Mark and Harry that was the wellspring of her remarkable spirit and courage.

That love lives on, through her family and her many friends, and through her writing; and because of it, so does she.

Always Bring a Buddhist With You to Long Medical Appointments

Five hours of medical treatment was all we could take. Fortunately it was all in the same place. Miriam,
my yoga teacher, drove. I can't safely do that.

First we saw my primary care physician, who ordered a bunch of tests: EKG, CAT scan with dye and an appointment with a cardiologist.

My EKG was slightly abnormal. The CAT scan  showed no embolism but did pick up a kidney stone and a bit of fluid around the lungs.

I saw Dr. Jaffe the cardiologist and he put me on blood pressure medication, scheduled me for an echo cardiogram and stress test. Stunned, we drove back to Jeffersonville. Miriam picked up my prescription and dropped off the mail. Then she took me home.

All through the day, Miriam kept me focused  on breathing and Buddhist thinking.

Queue  Doris Day: 'Que sera sera, whatever will be will be. The future's not ours to see, que sera sera.' 

It Can Get Worse

Writing this makes me shake. I was simply taking the two steps into the kitchen using my walker when I slipped and fell on my butt. My center of gravity was low enough that I couldn't get up so I tries crawling to a chair. In hindsight, I should have gone the other way because the phone was nearby.

The major complication was that I have food on the stove and starting to bur. The fire alarm went of and my dog went nuts, stepping on me, mashing me up as a desperately tried to reach the phone. I Inched my way over to where I could pull the phone down, along with other more weighty things. Phone in hand I dialed 911. Four fire vehicles arrived within moments, and started doing their thing, removing the scorched pot, opening windows and removing the smoke detector. One of them turned to me and took my vitals and checked for breaks, bruises and blood. Nothing. Suddenly a woman was holding my hand. I was my neighbor Sue. She stayed until the firefighters and EMT left. The she went a got me some pizza.

It was as bad as it gets.

Bump in the Night

It was dark, about 2 am. I woke up with a hankering for seltzer. I carefully made my way downstairs, made way to the kitchen, and that's when disaster struck. I fell on my butt and couldn't get up. Normally if I'm down, I can get up with a little bit of effort. Not last night, in the dark, in the cold, on the dirty floor.

I was down for 30 minutes, attempting to scootch my way to a spot where I could lift myself up. This was the lowest I'd sank in a while.

Happy ending. I arose from the floor, got my seltzer, walked carefully upstairs, washed off the dirt particles and applied hydrogen peroxide to prevent cellulitis. 

Lesson learned: no more seltzer in the night.

Surviving Leukemia

Beating leukemia to the ground is one thing; surviving the nasty side effects that linger for many years, possibly forever, can be daunting.

I've cataloged my own complaints: destroyed tear glands, three tooth extractions, melanoma surgery on cheek and ankle, leukemia cutis, neuropathy, weakness, loss of most muscle, extreme gvh of the skin and a touch in the liver; psychological issues. Forgive me if I've left anything out.

I have two friends who've made it past the so-called 5-year mark. (I'll be there in 3 months). One friend is suffering the debilitating side effects of prednisone withdrawal. We are as weak as newly born birds. She has gvh of the lungs, which makes it even worse. Another friend has lost 11 teeth to the treatment of the disease and will be getting dentures. She's had cancer of the tongue and mouth. Due to our toxic treatment, we are at risk for secondary cancers.

We manage to live the lives that were given back to us wisely if not as well as we'd like.

Not all leukemia survivors face these issues. Some return to productive lives, which for me would be having a job. Not dying is good.

And then there are several I've known who haven't survived. My heart continues to go out to their families.  

Day at the Docs

I left my house at 9:30 yesterday and returned at 4. No lunch, little water, lots of waiting. My upstate doctor wanted me to have a cbc before my injection because my platelets were low, 90. But yesterday they were 140 so it was a go. A go that chewed up 3 hours.

My primary care physician was willing to see me after that because I have cellulitis in my right hand. I fell again, at the bottom of the subway stairs when I was in NYC last week. I fell on my rear but I did scrape my hand. I have to use Purell more often. So she doubled my bactrim for a week. She asked how often I fell and admitted it was too much. She brought my neurologist in who examined me and wrote a prescription for a cane, the kind that stands up and hopefully keeps me up.

Retail Exhaustion

I've been wanting a new pair of jeans to replace my beloved "Mom" jeans. They fit me so well but had so many holes that even the patching was giving out. I finally tossed them and have been looking for a new pair ever since.

Getting dressed each day is especially difficult for me due to my numerous physical handicaps. Trying on a pile of clothes brings me to the verge of tears.But I had a 30% off coupon and I was going to use it. I tried on 3 pair of jeans, a top and a sweater. 3 out of 5 worked, although the jeans were not perfect. I'll still have to wear a belt. You know how they say orange is this new black? I've been collecting orange clothing since 1970. The orange cardigan sweater goes with the top as well as half of what's in my closet.

I couldn't bring myself to go through all the sales racks. I was hungry, thirsty, and had already made my kill. I left the store on a shopping high but on a wave physical exhaustion. I still had some errands to run so I steeled myself and carried on.

Some of my readers will be very proud of me.

It Was Just One of Those Days

No gossamer wings on this day 8 years ago. My wings were lead. Out of the blue, I was diagnosed with leukemia. I felt shock, mainly. Fear would soon follow.

It's not so much that I feared the physical act of dying. During chemotherapy I sometimes wished for it. What I feared was not being able to see my kids grow up. Mariel was about to graduate from high school. Would I live that long?

I did. I saw her graduate from high school and college. I saw Mark graduate from high school and college. I saw Harry graduate from high school and will attend his college graduation in two months.

Physically, I've been affected in many ways. I've had three teeth extracted. My tear glands don't function so I have to wear specialty lenses. My thyroid is shot. I have severe neuropathy which makes me quite unsteady so I fall a lot. Chronic skin and liver issues stemming from graft vs. host disease makes my prescription list lengthy. I have sclerderma, a tightening of the ligaments in my body. Getting up off the floor is challenging and would be depressing if it didn't look so ridiculous.

Mentally and emotionally, it's been a roller-coaster ride. Everyone says "hey, you're alive." Some days, that's meaningless to me. These days it's been better. My brain seems relatively okay, although the other day I ran the washing machine without the laundry in it. I see that as a senior moment. I know that with age comes a gradual physical and mental disintegration. I see it in my friends.

C'est la vie.

    

Complaining 101, An Intorductory Course

You know the old joke: where's the complaint department? On the roof. Here's a quick course in getting someone (anyone) to listens to your complaints.

To the question how are you? Never launch into complaint mode. Instead, begin with a compliment: gee, that color looks good on you.

Stop smiling and start complaining.

My back, my leg, my stomach, my scalp. You get the picture. Either you elicit sympathy or you don't. Always end with: well, it could be worse, and add your favorite phrase of luck.

You've completed the course.

Now students, you must listen to my complaints.

1. I tipped over in yoga today and was generally unsteady.
2. My orthopedist says that he wouldn't do a manipulation on my shoulder because my arm might fracture. That will be $50. Here's the name of an orthopedist in NYC (his father was Joe Namath's trainer) who is more experienced in complicated cases like yours.
3. Tomorrow is my final occupation and physical therapy sessions. My insurance company is hanging me out to  dry..

Next: Advanced Complaning.

Today's Travels

I awoke with a start. Somehow I'd slept for 11 hours. My body must have needed that extra time unconscious and in a supine position. I slithered out of bed and went downstairs to tend to Buck who doesn't mind sleeping late.

The front walk was once again treacherous. I liberally slathered snow-melt and took Buck on a walk. It was a short one due to the 10 degree temps and a wind chill of 20 below. Who will lose their grip first, Old Man Winter or me?

Thank heavens for my self-starting Subaru, which isn't garaged because the garage has too much stuff in it. I drove to Physical and Occupational therapies, which were torturous. I told them to be rough with me because I have to move this healing process along. I'm considering acupuncture, nutritional therapy for water retention and manipulation of my arm under light anesthesia. The latter is unbearably attractive because I think it will work faster. Who knows?

I went home for a quick lunch and put more mileage on by driving to Harris Hospital for my 4th injection of the week. When I got home my shoulder was aching so much I popped an oxycodone, something I don't do often. I opened a can of an Orangina wannabe, and put on an episode of Law and Order with a blanket over my lower body and a heating pad on my shoulder.

I could complain about other medical issues but I'll spare you the details. Thanks for continuing to follow my blog.

Black and Blue

Forget about slipping on ice. How about tripping over your dog and slamming into a door post. Ouch! I have a huge black dog who seems to enjoy getting under foot. He disguises himself as a rug, which you don't see until it's too late. I am uber-conscious about these pitfalls, but they happen.

At first it was a bump over my right eye with a small cut. I iced it and put a bandage over it. What I overlooked was that since I had my reading glasses on, they hit my right eye, which is now a beautiful shade of purple with reddish overtones.

I hope the color doesn't spread. It really looks as though I was punched in the eye.

Biggest Helath Challenge: Not Slipping on Ice

I went to my local oncologist yesterday. My counts are all good and I'm cleared for injections next week. My skin has improvded a little, my shoulder not so much. Someone told me about a therapy where they knock you out and then manipulate your shoulder in ways that would be too painful sleep. It gets the joint out of its locked position so therapy is more effective. I might try it if I get desperate enough..

In the meantime, my biggest challenge is staying upright as I navigate the ice patches around my house and car. It's been so cold that no amount of salt or chopping has much effect. The only "good" part about this is that it takes me back to 1978 when my mother and I were out in the Hamptons taking care of my grandmother. We went to dig the car out of 2 feet of snow while Paul Simon sang "Slip Sliding Away." I always think of her when I hear that song or I slip on ice.

Waiting for Other Shoe to Drop

I took the bus to NYC Wednesday and subwayed to my friends house in Brooklyn. I took the subway for two days and I'll just say it was grueling exercise. We then walked over a mile to our friends' house for dinner. Fortunately, that was highly restorative, Yuet made squid salad, steamed mussels in coconut milk and spices, steamed salmon and shrimp pad Thai, washed down with various Asian beers. We took a taxi home because I was half-dead.

Thursday, I went to see my oncologist and dermatologist. Even though I had a bad reaction to the Decadron, it did clear up the skin on my legs. I'm now trying a quarter of the original dose once a week. I started it Friday and so far I feel like myself, maybe even a little more peppy than usual. My poor dermatologist looked at my legs and said, "Patricia, I don't think there's much more I can do for you."

In between my two appointments, I walked 10 blocks (and back) to have a manicure and pedicure at my favorite place near where I used to live. When I walk in, the Korean owners fawn all over me, treating me like royalty. They also feel sorry for me a little bit, which is fine. I can be pathetic. Since I can't reach my feet, this was more about the nail-clipping than the toe color. Winter isn't a time to show off your pretty pink toes.

I took a taxi to Port Authority to catch the bus back to Monticello. There's really no convenient subway from my dermatologist's office. It was worth every penny. 

Half a Purple Mustache

My blogging friend in Massachusetts, who's also knee-deep in snow, knows how challenging lots of snow with veneers of ice can be for the unsteady. It's so easy to go down, and for me so hard to get up.

Thursday I went early to get my chemo injection and then across the street for a tooth extraction. The snow was just starting to build up and get slippery. All went well (only one nurse at the Infusion Center and the dentist and his assistant came to work) and I made it home safely. My gum didn't hurt much but the next day I saw a faint reddish spot near my lip. On no, gvh on my face, I worried.

Overnight it had snowed 12 inches. Time to shovel snow. I managed to make a path to the street but there was a snow bank 3 feet high. I had a brilliant idea. I needed to get my car out anyway so I began to wade through the snow. That's when I fell over. No damage to me but I quickly realized I couldn't get  up. With a combination of flailing and scootching on my rear, I made it to the door where I was able to reach the handle and crawl inside. A chair was my salvation as I was able to use it to get up. I guess I was going to miss my final injection.Throughout the day, it snowed another 6 inches, but Marty came around 7:30 pm to save the me. The next morning he dug out everything in a very short time. What a hunk! And no heart attack!

The gvh near my lip, which resembled half a grape mustache, was I realized, from the dental work. I have a very small mouth and that's where the assistant kept the suction device, also using it to pry it open a little more. I bruise easily, what can I say?

Injections, Extractions, Manipulations

Hey ho. Friday I had a cortisone shot in my shoulder. So far, my arm is still useless, but the doc said it could take a week to kick in. Today I started my week of Vidaza injections which I now get in the belly area because there's flesh there. Tomorrow I'll go to occupational and physical therapy for torture to my shoulder, arm and hand. Thursday I'll have another worthless tooth extracted.

The good news is that I feel muy bueno in general. I went to yoga Saturday and today after a 3-week absence. I only fell over once.

It's All Medical

I had an inlay put in a tooth today to replace an old filling that had fallen out. Another tooth (hopefully the last) will be yanked next week.

I drove across the street and had my blood drawn before the appointment with my local oncologist. I've been trying to wrangle in my herd of doctors so I don't have to drive so much.  Don't worry, I won't allow Dr. Strangelove and Nurse Rachet into my inner circle.

My darling healthcare company said they had to send my labs out, so I didn't get results STAT. But I know my blood is fine since I had labs in NYC last week.

Let it snow!

Big Accomplishment

Today was the first time I went outside since Monday morning. It's not just that it's frigid out there, which it is, I basically had no reason to leave the house. My dog-walker took care of Buck and ran some errands for me. I sat in the sunny front room napping, reading and watching endless episodes of Law & Order. Reader, they're not endless. I think I have one more left on tape. I have a Criminal Minds addiction as well, and there are still a lot of them I've taped but not watched.

I was not exactly dressed to the 9's (more like the 2's) but I walked to the town office to pay my real estate taxes which are due tomorrow. Then I got in my car to go the post office where I had 3 days worth of mail, even a check! I was out of common groceries such as milk, bread and tomatoes. I ended up buying a bunch of other things at the market, and then had to lug it all to my car, to the house--you get the picture.

I was and remain exhausted.

New Stratagies to Battle GVS Prove Challenging

I saw my oncologist and dermatologist in NYC last week. After Dr. G. saw the crud on my legs and how unhappy I've been with unstretchable ligaments and muscles, he commented that considering how bad I felt, I looked better than I did two years ago when he met me for the first time. What can I say? He's a gentleman.

Both doctors decided to take an aggressive approach to dealing with my skin issues. Dr. G gave me a megadose of dexamethasone and said I should be up all night, like I would if I took plain old prednisone. Instead, I crashed and burned two days later, having to cancel all my appointments including a trip to the Boston Foundation for Sight and a visit with some New Hampshire friends. Dr. L. told me to exfoliate the patchy skin with a blend of salicylic acid  and pramasone. Then I'm to cover the raw spots with a special anti-bacterial ointment. A day at the spa.

I'm functioning. I eat, I sleep, I take my meds. I'll be back soon. 

Another "ologist" Is Added to the Roster

As a blogger, you're always looking for things to blog about. On a blog about surviving leukemia with a stem cell transplant, things find you.

My new orthopedist recommends I see a rheumatologist because the MRI I had last week showed arthritis in my right shoulder, among other things. I'm going to see my oncologist in New York on Thursday and will filter this all through him. The orthopedist may or may not give me a cortisone shot based what my oncologist says. I don't think he'll like the idea of surgery. I don't.

Pain Log

In an effort to try and shed light on why my legs are so painful, I started a log last Tuesday. I've had 3 relatively pain-free days out of 11. I've been taking 2 extra-strength every day, 1-2 doxepins (anti-itch)
and oxycodone as needed, which is often.

The only pattern I see is that the pain usually happens in the afternoon/evening but can strike anytime. Last night, it woke me up in the middle of the night, and it came in the morning twice.

Am I getting obsessive or what? Maybe I should make a chart with a pain line on it. I'm so sick of this I could cry, and sometimes do. Is this a life?

Does persistent pain affect your brain? I was slowly poring olive oil into a pan today and none came out. I'd failed to remove the cap. It was almost funny.

Two Plogish Days in a Row

After being on the road most of Tuesday (blood draw--all numbers good), traveling to the train station to drop off Mariel, going for Chinese food with Harry because his flight was cancelled due to the frigid cold, and after I arrived safely home, I kept the Oxycodone close to my wretched body. At the restaurant I took two extra strength Tylenols, and when I got home I took an anti-itch rx called Doxipen. Nada. I took 5mg of oxy at 6pm. I was so far behind the pain, I decided that a glass of red wine might soothe the savage body limbs and popped another Doxipen. By 10 pm, I'd had it. I'd already filled my Tylenol quota. I'd already rubbed in various potions. Encore une fois rien. I took 2 oxys (10 mg) and left Earth for a place in which I drift in and out of sleep feeling no pain. Once the pain receptors are turned off, I'm good until morning or until later, or for days.Weird. At least I'm not like those poor fibromyalgia patients who have nothing to show for their pain. I, on the other hand, have lower legs that are splotchy, crusted and re-crusted.

The cold is really taking a toll on my muscles, tendons and ligaments (and possibly my mind), I think. Everyone else uses it as an excuse, so why not me? Schools cancelled; planes grounded; FedEx can't deliver my meds, the really important ones I have to specialty order. Jeepers creepers, when I was a kid I walked five miles to school in two feet of snow. Seriously though, it gets cold in the Northeast in Winter. That's why you layer up and go sledding or skiing and then defrost your toes in front of a fire gripping a mug of hot cocoa or a hot toddy. We didn't have finger and toe warmers back in the good old days. They just sawed off your toe or finger when it went hopelessly dead.

I grow old, rickety and crotchety as time goes by.    

Going Polar

I'm wearing double layers and have a portable heater by my side. The temperature has been dropping steadily all day, from 46 degrees at 7:30 am to 30 right now. That's warm compared to the frigid -4 we expect tonight. Mariel and I drove to yoga because I'm terirfied of slipping and falling down. I couldn't get warm during class, and my muscles rejected any attempts to stretch. It was depressing, especially since Saturday's yoga had gone so well. Plus, my legs were really itchy. Despair.

My legs still itch but I'm about to shower and lather my self with various products. I'm going to put on my 30-year-old Irish fisherman-knit sweater and hope for the best. I think I hyphened that phrase correctly. 
  

When Things Are Gray and White

We took our dog Buck for a re-check on his glaucoma yesterday at the NYC Animal Hospital. There's no change and we have to keep him on eye drops indefinitely. Buck and I are both handicapped; it's just he doesn't know it. While we were there, I saw a white greyhound five feet away from a dark-gray pit bull terrier. The only greyhounds I've seen have been gray, and most of the pit bulls I've seen have been white. You can learn something new every day.

But the way a white greyhound is an oxymoron. Think jumbo shrimp, pretty ugly and a whole half. Good grief!


Happy and Healthy New Year from The Plog!