Monday, December 31, 2012

Red, White, Blue and a Happy New Year, Too

Red, the color of my right eyeball. It feels fine, and I wore my PROSE lenses successfully yesterday. The left eye, which feels like it has a rock in it, looks great. I'd put the lenses in to see to avoid the dryness that's causing both problems, but we're visiting friends and going out to a party so I'm "saving" them for later.

White, the color of what I see outside. We got 7 inches in Jville Saturday, and there's about the same here in the Poconos. With the sun reflecting off the snow, I'm blinded and have to wear 2 pairs of sunglasses.

Blue, the color of my eyes (pupils). Blue, the condition of my psychic state due to the above and other annoying issues you'd think I'd be used to, resigned to or able to put some positive spin on. I'll not catalog them here.

It doesn't help that I dislike New Year's Eve, have always liked to spend it at home, and decide whether or not to stay up to see the ball drop in Times Square, or call it a night at 10. Last year, we were in Peru and watched the festivities on TV in our pajamas. I had to wake Marty up and force-feed him Prosecco at midnight.

Oh, I almost forgot about New Year's resolutions. I don't make them.

Tuesday, December 18, 2012

Feeling Good

I saw my oncologist in NYC today. Counts are good, and we'll start lowering prednisone February 1st. Yesterday I got my new PROSE lens for the left eye. My vision is great, without glasses, and since they deliberately made one eye a little weaker, I don't need reading glasses. So in this respect, I'm like a young person.

Physically, I'm feeling more agile. I can pick a coin or paper off the floor, and my arms seem to have a bit more motility. This, without having done yoga for over a week.

May this continue.

Monday, December 10, 2012

Busy Morning

I don't usually set the alarm for 6:30 am but a lot was going on today. Marty had to be in NYC for an appointment, and I'm scheduled for the next and third round of Vidaza this week at the local hospital. I dropped Marty off at the bus terminal and then found a local post office to send a bunch of packages. I can never figure out what boxes or envelopes to choose to make it the cheapest. Thankfully the woman there was very helpful.

On to my appointment. First I had a blood draw. All is pretty normal on that front, with lowish RBC's. Then I went to the Oncology unit where I saw the nurse, the nurse practitioner, and three nurses in the infusion unit. I had my blood pressure taken three times by three different people, with it going down each time until it was perfect.

For some reason, the nurses couldn't believe I wanted an injection in my underarm rather than an infusion, in which they'd still be poking me to find a vein that would stand up to the pumping. Good luck. I told them I preferred 30 seconds of discomfort to them ferreting around my limbs to find a usuable place and then have to sit there for 10 minutes while the Vidaza flows in. The injection didn't hurt much at all and 5 hours later, I don't have a bump or any pain.

Marty's staying in the City so I'm going wild here in the boonies! Woot!

Wednesday, December 5, 2012

Drug Hunting in the Mountains

Sometimes a pharmacy doesn't stock the drug you need but can order it for the next day. I needed a few prescriptions refilled yesterday so I went to my local pharmacy in Jeffersonville to drop them off. One drug, Gleevec, the pharmacist had never heard of. She looked it up online and tried to see if she could order it for me. She wasn't successful, suggesting I check with a CVS (original pharmacy that filled the Rx) in the area to see if they had it or could get it. The "area" means within 50 miles.

I called the CVS in Honesdale, PA, some 40 miles away. They had Gleevec and transferred the refills from my NYC pharmacy. This is how these processes should work. My friend Doug, who drives through Honesdale on his way to Jeffersonville, will pick up the Rx for me on Saturday when he's coming for dinner.

Sometimes, you only have to jump through one or two hoops before achieving your goal.

Wednesday, November 28, 2012

New Oncologist

No, I'm not leaving Dr. Giralt at MSK; and Dr. Antin at Dana-Farber says he'll always be my doctor. I've been very lucky with most of my oncologists.

Yesterday, I went to the Catskill Regional Medical Center to set up a relationship with a new oncologist, Dr Sethi. NYC  is a 2.5 hour drive. This facility is 25 minutes away. I'll be able to get my Vidaza treatments there. As a matter of fact, I already have my next series of shots in 2 weeks. I already met all the nurses who work in the infusion lab. They seem very nice but were curious as to why I prefer injection to infusion. For me, getting a shot means something positive--the flu shot, vaccinations. An infusion takes me back to Cancer World--blood transfusions, platelets.

Dr. Sethi was nice, and knowledgeable. He admitted right away that it would take him a while to digest my history. He also planned to call Dr. Giralt to discuss my case. He advised that I use the hospital for routine things like blood work. If I needed to be hospitalized, he'd admit me at Catskill, but would prefer I go to a larger hospital in Middletown, an hour away. This makes a lot of sense. At that point, I'd probably go to NYC, say if I needed a bone marrow biopsy.

I'm feeling great. My doctor army is poised and ready to do battle. I hope they remain at ease for a long time.

Thursday, November 15, 2012

Blood in the Night

Yesterday was quite a day. We moved out of our Upper East Side apartment to our house in the Catskills. Yup, we're starting a new life in greener, less stressful acres.

Fortunately, I was not involved in moving day because I had to have my 3rd Vidaza shot of the week. By some miracle, I was able to meet my friend Connie for lunch. Then I had the walk-through of my apartment by the agent. After that, I schlepped my luggage on the subway to Brooklyn where I'm staying at Sandy and Dianne's.

Sleeping in an unfamiliar room is a challenge for me. I wake up and have no idea where I am. I'm under the influence of ativan. Add to that no night light and there was a disaster waiting to happen.

At some point, I made my way into the bathroom to find that blood was dripping from an old wound on my right arm. I must have bumped into something. There were drops of blood everywhere. First, I tried to staunch the bleeding. I looked in various drawers for bandaids, to no avail. Finally, I wrapped my arm in toilet paper, moistening it to create a plaster of paris effect. This worked pretty well. Then I cleaned up the blood as best as I could and went back to my room.

Falling is one of my specialties. Once in the room, I tripped over something on the floor, probably my suitcase, anf fell on my right side. I seem to be made out of rubber, because whenever I fall, I never get seriously injured. Last night was the same. I went to bed, with a sore shoulder.

In the morning, I tried to do a better job with my arm wound. I found a gauze pad in my suitcase and some surgical tape. I think I did a good job with it because it's still intact and the bleeding has stopped. That's when I in looked in the mirror and saw the bruises on my shoulder and face. I put some cover-up on the long grayish mark and was ready to face another day filled with appointments, medical and otherwise.

Sunday, November 11, 2012

Where I Am

Hurricane Sandy canceled my cataract surgery, but since I begged my doctor to schedule me for the next available slot, I had the surgery the following Wednesday. It went well and I can now see out of both eyes.

On Thursday, I saw my oncologist. My blood work is fine, my liver is doing better, and we decided to leave my meds unchanged. I had been experiencing blood in my urine with no other symptoms. I gave a sample to rule out infection, but Dr. Giralt and I both felt it was more likely to be bladder stones, which I'm prone to. Water retention remains a mystery.

I also saw the radiation oncologist Thursday and he was pleased with my progress and feels the leukemia cutis is gone. To be safe, I'm scheduled for a PET scan next week.

Overall, I have good energy but can't do yoga for another week due to my cataract surgery. I'm putting my massive amounts of energy into the BIG MOVE next week to our country house. Yes, I'm trading the big city lights for green acres. I'll still see my doctors at MSK, but will arrange to have my Vidaza shots at a local hospital. I'll also get an oncologist at that hospital.

I start round 2 of Vidaza on Monday, and when I'm finished on Friday, I'll wave goodby to a city I've lived in on an off for 21 years. I may yet live there again.

Sunday, October 21, 2012


Since my insurance company wouldn't pay for Lyrica, my doctor prescribed something call garapentin which is used primarily for epilepsy. I no longer itch! But the drug has side effects. I'm completely loopy when I take it, so I don't dare drive or use machinery. It makes me concentrate more so I can actually do things. Of course, I'm on a mega dose of prednisone so they probably counteract each other.

The cataract in my left eye, which I'm having removed on Halloween, has really affected my vision. Even with the PROSE lens I can't see much, another reason not to drive. Seeing through one eye works okay, but adds to my sense that I'm in a semi-hallucinatory state. If you saw me walking down the street, you would swear I was drunk. 

Wednesday, October 17, 2012

Upping the Pred

I saw my oncologist yesterday and told him how awful I feel physically and mentally. He was very sympathetic and agreed we needed to do something. The something is a high dose of prednisone (60 mg) for 4 days and then a gradual taper back down to 20. I took 60 yesterday and I'm in hyperdrive. I will also see a therapist.

You can tell right away when I have excess energy. I switch my shoes according to the season. I organize my lingerie/socks/scarves drawer and throw out things that add to my sense of disorder. I can barely tolerate disorder in my natural state. On predinisone, I'm an unstable nuclear device.

My plans for the day, other than achieving world peace, include another Vidaza shot, yoga, perhaps a massage and a trip to the pharmacy to pick up all my drugs. I plan to make turkey thigh curry tonight. Last night I crashed and burned before I had a chance to make it. Marty took pity on me and made Trader Joe's hot dogs and a salad.

The Yankee game and the debate faded fast. It's just as well.

Monday, October 15, 2012

Vidaza Shot No. 1

My first 5-day round of Vidaza shots began today. It was a walk in the park. The plan is to do this regimen for 3 months: 5 daily shots, 30 days rest, repeat.

I worried about the usual suspects: injection pain, nausea, swelling at the sight. Am I using too many colons? So far, I've been fine. I ate lunch and went to yoga.

On the foot front, I consulted my son. He's an elite runner who's had a number of injuries, minor and major. He asked me what I'd been doing prior to the pain in my left foot (only when I walk), which was nothing except walking on an uneven beach. He told me to ice the area for 15 minutes several times a day and take ibuprofen. The pain is gone!

I'll mention this to my oncologist tomorrow during my appointment. He'll probably recommend an x-ray just to be safe. I'm more concerned with my extreme skin gvh and water retention. Today is the first day in a long time I haven't been sad.

Saturday, October 13, 2012

Envelopes Are Made to Be Pushed

My recent lethargy seems to be lifting, and it's not due to drugs. I'm still waiting for the Lyrica to be approved.

Yesterday, I hung around the apartment trying to make my desk recognizable as a desk. Then I took the subway downtown to meet my friend Jim for lunch. He took me to a fancy-shmancy restaurant and we had a mahvelous meal. Buoyed by my clam chowder, chicken caesar salad and a cool, crisp Sancerre, I made a bold decision. I walked a block to Century 21.

Century 21 is a discount department store crammed with merchandise and people. Tourists flock there. I once saw a German man drop $7000 cash on a suit and some shirts and ties. Only the strong survive this store, where getting jabbed with elbows is expected. I went in to look for a birthday gift for my son and some items requested by my daughter.

On the mens clothing front, I was very successful. Even with my coat off, the sweat was pouring down my face. I didn't find anything for my daughter so I went home, only I didn't go straight home. The express train was waiting for me at Fulton Street so I took it to 86th where there is an H&M clothing store. This is another toxic shopping venue, but I would not be thwarted.

After finding exactly what I was looking for, I stood on line sweating for 20 minutes to purchase my bargains. Then I rushed home (not easy with my bum left foot (another story) to wake Marty and drive up to Poughkeepsie to take my son out for dinner. I didn't even nap in the car!

I had a martini, something not approved by my medical staff. Harry is my baby and he just turned 20. The cold crisp cocktail made me feel great, something my buckets of pills do not.

This morning, we rose early and drove to Waterford, CT to see Harry compete in a 8k cross country race. It was a beautiful day, and Harry PR'd and was happy. We had lunch al fresco at Captain Scott's which is a lobster shack in the marina in New London. As per my friend Jim's recommendation, I had a lobster roll, made without mayo (yuck), just butter and lemon.

We flew back to NYC but I was unconscious for most of it. I needed that nap. In 45 minutes we have to be in midtown to meet people for dinner.

Friday, October 12, 2012

Bumps, Flakes, Scales and Other Disfigurements

I could stand it no longer. I went to see my dermatologist to show him the flare-up of my skin gvh. He agreed it was nasty and that he would discuss it right away with my oncologist. In the meantime, he gave two prescriptions, one for a spray called Clobex and one for Lyrica, a pill. Lyrica is advertised on TV. The side effects are daunting, but they have to reveal everything for liability reasons. I guess I'll give it a whirl.

I've developed a couple of patches on my face, which has remained clear until now. If it spreads on my face and if I gain any more weight, I'll go on a yoga retreat somewhere. Who knows? Maybe a good toxic draining and some spiritual rehab would cure me.

Wednesday, October 10, 2012

Fortune Cookie Truth

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 each month.

Vote for me.

Friday, October 5, 2012

On Vacation

I'm on vacation from my life. Five women and I are in a villa on Sea Island in Georgia. One of the women is in a program like a time share, so this costs us nothing. The connection among us is that we all lived in Costa Rica at some point. It's the gift that keeps on giving.

Skeet shooting, biking, kayaking and yoga are the activities of choice we've pursued so far. We've been making good food. There's no one to care for but ourselves. That's living.

My health issues have come with me, but I haven't been down in the dumps. I itch like crazy, and the water retention has reached epic levels. Even my eyes have been driving me nuts, despite getting a new PROSE lens. Debris is already settling on it, so I only get a few hours of clarity.

I've been sleeping well, sharing a bedroom with my old traveling buddy Judy. In our younger days, in Guatemala and Cuba, we didn't snore. Now we do. A little. It's been great sharing stories about our Costa Rica days and catching up on current life. I don't often speak about my Leukemia history, but these women have been asking me a lot of questions and I've convinced them to sign up to register to become donors.

The link always bears repeating:

Wednesday, September 26, 2012

Eyes Wide Open

I had cataract surgery on my right eye August 8th. The vision was so good after the patch came off that I could read without reading glasses. I didn't throw them away.

The problem was, without a PROSE lens on that eye, my lack of tears meant I frequently had to lubricate the eye, and it was half-closed much of the time. I had to wait until I got the green light from my eye surgeon before getting a new lens.

My left eye will have its cataract removed on October 31, just in time for me to be a pirate for Halloween. I still wear the PROSE lens on that eye; it's just a little blurred.

Last week, I got the go-ahead for a new lens. Today I received it. I was so excited. Before I popped it in my eye, I thought, what if this doesn't fit or give me good vision? I'm not usually such a pessimist but I think you can understand why I'm hesitant to celebrate anything health-related.

The good news, make that great news, is that it feels fine and I have the vision of a fighter pilot. My vision is so well-corrected, I have to wear reading glasses again. I turned the apartment upside down searching for glasses. I have at least five pairs, three of which are in Jeffersonville. I couldn't find mine so I'm wearing an old pair of my husband's that I found in a drawer.

It's true. One day at a time.

Sunday, September 23, 2012

New Symptom

I finished my fifteenth and final radiation treatment Friday. I saw the doctor afterwords and mentioned that I'd been experiencing slight arrhythmia for the past week, off and on and at odd moments. I'll have several episodes in one day and have none for three. Marty's been taking my pulse at these moments, confirming that it's irregular and also rapid, around 100. My normal resting pulse is 72, sometimes lower. The only time I've experienced rapid heartbeat on its own was at the end of a run. Three years ago, the night before I was to be discharged from the hospital after my second transplant, I had rapid heartbeat (205 bpm) and arrhythmia together. Let's just say the crash cart was brought in and I was hooked up to every monitor there is and injected with a drug that made me feel like I was dropping into the abyss. I took a medication for a week and it never happened again.

The doctor said I should quit drinking coffee (ain't gonna happen) that if it continues, I should see a cardiologist. It happened last night, briefly.

I don't think cardiac arrest is in my near future, but I'd hate to survive leukemia and have my heart fail. You can be sure I'll be seeing a cardiologist, just one more doctor to add to my extensive cadre of specialists.

Friday, September 14, 2012

If I have one life to live ...

... let me live it as a brunette.

Yesterday was filled with appointments. After an early yoga class, I came home and had breakfast with Marty, then we were off to MSKCC for my appointment with Dr. Girault. My blood work was normal, and no meds were changed due to my leukemia cutis. The bump is getting smaller but is not yet gone. I'm scheduled for three additional radiation sessions next week, and I begin Vidaza shots October 8th.

I took the bus to my hair salon. I'd decided I needed a change. My blonde highlights were becoming too blond and I was sick of them. After discussing options with my stylist, I decided on a rich chocolate brown with red overtones. I look really different. When I came home, Marty actually noticed that my hair was changed. Usually he doesn't know when I get a cut or color.

I did a little paper pile movement (that's when you take a stack of papers and maybe group some together and pull a few out and remake the stack) and then left for my radiation treatment. I stopped on the way to get a 20 minute massage of my arms which look and feel buff but are merely uncomfortably hard and thick with water.

Radiation was fine except for the wait which nearly undid me. I had to practice a lot of meditation, eyes closed, because I was out of eye drops. When I went for the bus at 7 pm, it was a bit chilly. The bus didn't come for 20 minutes so I shivered on 1st Avenue and cursed the darkness. A late dinner followed. The Yankees beat the Red Sox and I drifted off to a deep sleep.

Monday, September 10, 2012

Four More Zaps

My radiation treatments end Thursday. Frankly, the "spot" has not "melted away" as my radiologist says it will. I have four more treatments this week so we'll see if the melting begins.

Yesterday, I experienced an odd pain in my sternum which was worse when I breathed or moved. I never used to be this way, but my first thought was heart attack and my second was radiation in the wrong place. Two ibuprofen later and watching the Yankees bomb the Orioles, I felt much better. Still, I was tired and couldn't go to my friend's art exhibit in Brooklyn as planned. Fortunately, I seem to have new respect for my limits.

Thursday, September 6, 2012

There's a Mole in Your Eye

Sometimes I feel like I have a mole in my eye, but today when the ophthalmologist asked me if anyone ever told me about having a mole on my right retina, I said no. We'll just watch it. Easy for him to say.

I was inflated, dilated, refracted, anesthetized, de-suturized and terrorized by the mole. My 4-week post-cataract surgery exam showed my cornea was in great shape. Having sutures snipped and tweezered out of your eye isn't pleasant, but I went to Playa Gringo. That's the perfect beach I went to in Costa Rica where I've built my fantasy house overlooking the beach.

I'll be having cataract surgery on my left eye soon. I still need to get a new PROSE lens for my right eye to treat my severe dry eyes. Saying goodbye to my daughter, who's returning to Peru for 6 months, drew nary a tear, just a crumbled expression with lip quivering.

Now I'll relax and wait until my radiation appointment at 5:40 pm.  

Wednesday, September 5, 2012

The Radiation Experience

First you wait in a room full of patients and supporters. When your name is called you take a key and enter the changing room. You slip into a super large robe worn backwards, making you look as though you're about to graduate as a Doctor of Whatever, minus the festive hat. Then you wait in an anteroom until they call your name. The cheery technicians lead you to the table and get you situated. This takes about 5 minutes because it has to be very precise. Yesterday, Glenn Gould was playing the Goldberg Variations. Last week, it was various jazz singers, mixed in with Avril Lavigne and Aerosmith.

They slip my right arm out of my robe. I place my arms over my head in supports that make me feel somewhat less uncomfortable. They place a 1 cm bolus (a piece of fabric that targets the rays even more) over my right breast and tell me to stay as still as possible. I usually try to meditate. I never think about being zapped by radiation.

When it's over, I put my robe back on, go to the changing room and get dressed. I leave the clinic aglow with the probability that my tumor is melting away.

Thursday, August 30, 2012

The Plog Defined

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.

It's Such a Perfect Day (Lou Reed) sang out from my phone. It was Mariel calling from Boston telling me her latest travel plans and by the way did I pick up her dress from the cleaners. I had no choice but to get up and get moving.

The big event of the day was taking our dog Buck for an ophthalmology exam at the New York Veterinary Hospital. Buck was born with a problem in his left eye. His vision seemed to be deteriorating in that he was bumping into things more and more. It turns out he has detached retinas in both eyes which will be treated with 20 mg of prednisone per day. Sound familiar?

I was relieved. If they'd told me Buck was going blind, I would've crawled into bed when we got home. Instead, Marty made me an egg cream and I wrote this post.,

Tuesday, August 28, 2012

Billie Holiday Soothes the Soul

First I had blood drawn. Then I had my vitals taken. Then I saw my oncologist. We discussed The Plan. Basically, I'm not changing any meds. I'm having 12 radiation treatments, followed by the Vidaza regimen.

After the doctor, 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.

Tuesday, August 21, 2012

Radiation and Vidaza

The war against leukemia will be fought with radiation and Vidaza shots. Minute measurements were made on my breast, along with four permanent tattoos. I'm scheduled for the first of 12 doses on August 27.

The injectible drug I'll get is called Vidaza, most commonly used for oddly shaped red blood cells. I'll ask my doctor for its link to leukemia protection. I'll have to go to the clinic for the shots because they have to be mixed. I was hoping Marty could do it, because he's mixed and injected me before.

I'm going to my 40th high school reunion Friday on Long Island. My skin is so ugly, I'm planning to wear long sleeves and pants. I certainly don't want to explain my health history to anyone. Graft versus host disease takes a long to to explain. Plus, I'd rather talk about my experiences, my children and my dogs.

Monday, August 13, 2012

Bone Marrow Biopsy Negative

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.

Ironically, the day I found out the leukemia was trying to get me again, was the anniversary of my 3rd transplant. I should have been celebrating with champagne. Instead, I took ativan.

The first appointment I had the next day was with my ophthalmologist to check out my eye. Then I met with my oncologist, Dr. Giralt, who did a biopsy, ordered the PET scan and explained the various options to me, depending on whether the leukemia was in the marrow or not. Fortunately Marty came with me. I was a bit overwhelmed.

I didn't want to broadcast this because I didn't want to upset anyone. Only a handful of people knew. I can write this post because when I met with the radiation oncologist this morning to find out about targeted therapy, Dr. Giralt called to say the marrow was clean.

After some measurements and what-not, I'll receive 12 zaps to the nipple, one each day. Doesn't sound so bad. 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.


Thursday, August 9, 2012

Cataract Surgery a Success

My appointment wasn't until 9 but i arrived early. Why do I do this? I wasn't wheeled into surgery until 11:30. The anesthesiologist, who has 36 years of experienced couldn't find a suitable area for an i.v. to deliver the conscious sedation. He poked, he prodded. He tried 4 spots until he hit gold, but not before trying my foot which sear. I was ready to call the rd with pain, so much so that I cried out and the nurse ran over to hold me hand."Do you think you can do this without sedation?," he asked. I did receive many lydocaine sticks in the eye area. I said I didn't think it would be a good idea.
He apologized of course, and the next hole worked.

Surgery proceeded but took a long time. Because I use the PROSE lens for moisture issues, they had to put a lot more sutures in. I felt every one of the babies. It was maybe a 6 on a scale of 10 and it went on for 30 minutes. No one seemed alarmed by my grunting and moaning, so I couldn't escape the pain. I shouldered through and after it was all over, my eye felt fine.

Dianne picked me up and we took a cab the short distance to my apartment. She walked Buck while I went into the bathroom to see the wreck of my face. I couldn't wear glasses because they didn't fit over the eye patch. I ate, I listened to some Olympic competitions. I went to bed early.

This morning they took the patch off and the vision it that eye is 20/50. I am typing this with no glasses on, my right eye doing 80% of the work. We still have to work out the whole PROSE deal, and I can't do yga for a week, but some progress has been made.

Thursday, August 2, 2012

Surgery Consult

I set off for my appointment with the dermatology surgeon early, arriving 15 minutes before my appointment. I was brought in to a room at 4:40 and was quizzed for my medical history by a fellow named Meaghan. Then Indira came in to take photos of the site. I was so cold, I put on a hospital robe.

At 5:24, Meghan returned to say the doctor was doing a procedure and I'd have to wait 30 minutes more. What could I do? The punch biopsy area was starting to throb and my contacts needed to be irrigated but I had no materials. I made and received calls, including one from my daughter in Peru. Dr. Nahal came in at 6 and examined my leg. The area, my front ankle, is too tight to suture so I would have a draining wound to care for 3 months or so. That didn't sound so bad. The other option, which the doctor is investigating today, involves seeing another surgeon and having a skin graft at the time of removal. The graft would have to be cleansed and dressed for 3 to 5 months, until it "takes." That sounds worse to me but I'll see what Dr. Nahal has to say.

I got home at 6:30 and had a gin and tonic. Then I made dinner and forgot about my day of dermatology. 

Wednesday, August 1, 2012

Punch Biopsy

It wasn't so bad. Very little blood, a few dissolving stitches, and a big white pad. The small whitish plug will be analyzed for abnormal cells. Results in 7-10 days. I can't sustain anxiety for that long so I'm going to try to banish it from my mind. My dermatologist didn't seem to know what it was, besides thickened tissue.

I just love a good medical mystery. When I read or hear one about someone else..

Tuesday, July 31, 2012

Keep Calm and Carry On

Looks like I'm going to have a nipplectomy. Well, not the whole nipple, but almost half. When I went to my oncologist today for my monthly check-up, he wanted to see the bump right away. "It has to come off."

He never mentioned the phrase leukemia cutis, I did. I'd had a patch of it three years ago on my back. Never mind that the physical aspects of it were so different from the lesion on my nipple. My doctor thinks it's cgvh but we have to be sure. I'm seeing a dermatological surgeon tomorrow anyway for a consultation on the melanoma on my ankle. Nothing like killing two birds with one stone.

My blood counts are good. I feel good most of the time. Except for pesky reminders of the radiation therapy I had (cataracts and melanomas), I accept my condition as it is now. I deal with it.

"Have you ever had a spinal tap?" asked my doctor. "No," I said. "If it is leukemia cutis, we'll want to infuse you with chemo medication through the spine." Ouch.

I may not know what the bump is for a week or so. I don't think it's coming off tomorrow. In the meantime, I'll keep a stiff upper lip and carry on. 

Saturday, July 28, 2012

After the Rant

Laundry Brook is closed today
I hope I haven't made anyone in need of medical attention upset with all my ranting. It was better than taking medication.

Today has been a good day. We drove up to the mountains yesterday and did a little shopping (shoes for Marty, a cheap floor fan, and some odds and ends in Wal-mart). We stopped to see Harry at the Club and dropped off running shorts and trail mix. We arrived at the house around 1 pm and drove to the Welsh Cabin for lunch. The restaurant doesn't open, however, until 3 so we went into town for pizza. I overate and was too bilious to go to yoga

Dinner was delicious: turkey parts roasted on the grill, brown basmati rice and green beans. I made a mock gravy from chicken broth, wine and spices. The only drippings we managed to corral were when we let the turkey rest and started slicing the breast.

I tried to watch the opening ceremonies of the London Olympics. I came in at the part with milkmaids and chimney sweeps. Something like that. I enjoyed the British music spanning 40 years from the '70s to now. I think they left out Pink Floyd but can't be sure. The British humour didn't leave me gasping and hooting, but it was funny, especially Mr. Bean playing the piano. The parade of nations was a low-light in my book. The countries I wanted to see were rushed through at the end of a commercial break. It appealed to me more as a geography lesson than anything else. I think I went to bed after Iceland.

A wet rag has been squeezing itself over us all day. We were outside reading for a while. When I got ready to walk to yoga, wearing sunglasses and a hat, the rag twisted a skoch (a wee amount) and Marty drove me there. The walk home was hot and sunny. Yoga was so wonderful, I felt like I'd just said good morning and there I was saying namaste. 

After lunch I went to my 1 o'clock massage. Lucette forgot about me so I went to the market and came home. She called and apologized. I'd felt really good so a massage, though always nice, was not needed. I can't usually say that.

It's still spritzing outside. We're having BBQ'd ribs, corn and Caesar salad for dinner. The brook is swollen, the color of cream of rust soup topped with curls of creme fraiche. Gag me.

Thursday, July 26, 2012

Paying Too Much For Medical Care

I just received a thick packet from BlueCrossBlueShield with a number of Explanations of Benefits. All were generated by a visit I made to my dermatologist several weeks ago for a routine check-up..

Here are the charges:

1.Office visit: $230
2. Surgery: $360
3. Surgery: $1212
4. Pathology: $506
5. Pathology: $534
Total Charged: $2842

I will be billed $519.53 co-insurance; my insurance company paid $2078.49. Presumably lost in space: $243.98.

The appointment took about 30 minutes. My doctor examined me and found a suspicious spot. The nurse came in to ask me questions and explain the procedure. The doctor came in and injected me with lydocaine and took a small skin scraping. This was sent to pathology. The nurse called me two weeks later to say the biopsy showed melanoma and I will need further surgery. My prior post mentions that I will meet the surgeon first (translated: office visit); she will remove the spot (surgery); she will send it to pathology, probably a number of times until it shows clear margins. I estimate this will cost $3450, based on charges incurred until now for said spot.

Folks, that's $6242 to slice a piece of my skin.

Sure, I want to get rid of the cancer but how will I feed myself? 

Aside from what my husband pays for health insurance outright ($6000), we've already paid thousands more in drug co-pays and other charges. I'm applying for financial aid from Memorial Sloan Kettering to forgive over $4500 in charges from outpatient services. I owe the doctors about $2500. Our family deductible kicks in at $7000 which I'm sure we've already topped.

My husband has a good job, and I don't mind paying out-of-pocket what's reasonable. After all, having health insurance has probably saved my life. Two provisions of Obamacare matter here: pre-existing conditions won't leave me in the lurch, starting in 2014;
lifetime payouts can't be limited. I don't know when that one starts.

I should live so long.

Too Much Medical Care?

That's the question posed in an article published in yesterday's The New York Times.I'm a bit biased, given my six years of treatment for AML. I think I've had about the right amount of medical care, as costly as it's been.

I've been to three top-notch cancer centers and it's interesting how they differ in terms of how closely they follow you and how many tests they order. At Dana-Farber, my doctor was efficient and didn't spend a lot of time going over every med and symptom. I feel he ordered tests prudently. 

At New York Presbyterian-Cornell Weill, my doctor spent most of her time with me typing into her computer. Her nurse practitioner had already asked me all the relevant questions and examined me. That was wasteful and time-consuming. My doctor recommended photopheresis which is invasive, costly and sucks 10 hours out of your week. Other than leaving me with a nasty scar on my shoulder and scar tissue which impedes movement in my collarbone, it did nothing for my skin. At $2500 per treatment, I couldn't see the point of continuing, but when I asked my doctor, she said I should continue for another three or four months to make it a year. I stopped that day.

At Memorial Sloan Kettering, where I am now, the degree of  medical care runs somewhere in-between. The only thing I can complain about is that in order to have a freckle-sized melanoma removed from my lower shin, I have to first have a consultation with the surgeon, and then schedule the surgery. This extra step seems gratuitous and I hope I won't be charged for it. My dermatologist already biopsied it, so it will be three appointments plus follow-ups.  I already spend so much time on medical care, I do wonder why some doctors seem to want to spend more time than ever on ordering and reviewing tests, and then scheduling seemingly extraneous appointments to deal with the issue. Don't doctors want a life?


Tuesday, July 24, 2012

Suspicious Bump is a Bust

Well my mortal flesh is melting. I'm back in NYC and the temp is 98.8 but feels like 103. I was out all morning and kept the A/C off. I cranked it up to high and put the fan on for good measure. Ahhh.

Yesterday, I went to my internist for a pre-op exam for cataract surgery. I showed her the bump on my nipple and she said I should have it checked out right away. As soon as I finished my appointment with my ophthalmologist later in the day, I called my oncologist who scheduled me for a mammogram and sonogram this morning at 10:30. After much breast squishing and sonogram gel, the radiologist came in, and pronounced me tumor-less. She doesn't know what the bump is (skin thickening?), suggesting I see a dermatologist. I left at 1 pm, significantly cooler and calmer. 

I've always thought the bump was a symptom of skin gvh, just like the huge hard bump I have across my entire belly. I don't mind looking 5 months pregnant and I don't mind benign breast bumps. I don't want my third eye to start bulging though.

Friday, July 20, 2012


It's cool today so I thought I'd squeeze into my tiny sewing room on the 2nd floor and stitch the seams of a dress that's a little too big for me. I have a number of projects going. The curtains I've prepared for sewing are neatly folded in a closet, victims of my inability to get my machine to make neat stitches on the fabric I'd purchased for this very room. 

I rummaged through my sewing basket, formerly a Salton bun warmer, to find suitable thread. Then I tried to set up the machine. I wound the bobbin and inserted it. I had a hard time threading the needle, but finally did. My attempts to snake through to bring up the bottom thread met with failure. I got very frustrated, knowing that I was battling poor vision, shaky hands and pudgy fingers. I gave up.

But I didn't give in. I decided to clean out my sewing basket. I have many spools of thread, but for some reason, I have two spools of orange, two red, two forest green, one fuchsia and one burgundy. I guess I'm partial to those colors in clothing and home decor. In addition to needles and pins, there were loose buttons and and various sewing machine implements. When it was empty and I'd tossed bits of fabric, most of the buttons and things I couldn't recognize. I threw away the broken plastic tray that sat inside the basket, replacing it with a two-part bottom of a food container. Thrilling, I know.

Despite my disabilities, I will sew the dress and the curtains. Some day. In the meantime, I admire my reorganized sewing basket.

Living color


Thursday, July 19, 2012

Feeling Hot Hot Hot

It's been hot here. It's been hot everywhere. It's the top story in the news. New York City had 100-plus readings yesterday. Even here in the country it was above 90 degrees. We didn't get a drop of rain.

While trying to go to sleep last night (no A/C), I thought about the hottest I've ever been in my life. There were many times the temperature soared above 100. Once, it was driving back from Block Island. Another time, it was a Yankees game at the Stadium. When I was a teenager traveling cross country with my family, it hit 127 degrees in Phoenix. The motel pool had an ice machine cranking cubes into the water, which otherwise would've provoked hypothermia in all who swam in it. I spent most of the night in a somewhat air-conditioned room, vomiting from the combination of bad Italian food and relentless heat.

But there was one time I was hotter than I'd ever been in my life. Early in my treatment for AML, my temperature shot up to 105.9 degrees. Fortunately, my white cells had just rebounded and I had gone to the hospital when my fever was a mere 102. My catheter had gotten infected, and my body was roasting my flesh to battle the bacteria. I lay on a cooling blanket all night, with ice packs tucked around me as though I were a fish at the market. The experience was unpleasant to say the least and I really just wanted it to be over.

I doubt I will ever be that hot again. 

Tuesday, July 10, 2012

Another Day, AnotherMelanoma

The freckle/mole turned out to be evil. The biopsy tested positive for melanoma "in situ." The surgeon's office will contact me to schedule an appointment.

But there's something more worrisome I noticed last week. I felt something on my breast as I was drifting off to sleep. I had a dream that there was a lump that covered the half of my upper lip. I kept feeling my lip the next day, but there was nothing there. A few days later I realized that it wasn't my lip, but on the outer edge of my right nipple. it's quite hard and follows the shape of the nipple, maybe half an inch long and a quarter wide. I just had a mammogram in April. Maybe this is a plugged duct or something having to do with my skin issues.

Have you read the articles about the blood cancer patients in The New York Times? Through connections and gobs of money, they had their genomes mapped to find which one (or more) was responsible for turning on their cancer. An ALL patient survives (so far) and a woman with a rare T-cell skin disease was treated and died a few months later. They said that maybe they'll be able to do this for everybody 10 years from now.

In the meantime, stay away from toxins because they also throw the switch. I'm sure my 16 rounds of chemo and 7 radiation treatments are churning around inside me, a deadly stew waiting to poison me in new and interesting spots. 

Carpe diem!

Friday, July 6, 2012

Sad Sleeping

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. 

I tried to watch The Time Traveler's Wife with Marty, but it didn't hold my interest. I was tired, so I took my ambien and went up to bed. 

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.

I also thought about how I learned that I was a much-loved person. This was remarkable to me and still is. It made everything bearable, but also more depressing because if I died, these people would feel bad. I owed it to everyone to stay alive.

One trick I learned during my hospitalizations was to mind-travel to Playa Gringo, a beautiful slice of white sandy beach lapped by warm turquoise water reachable only by kayak. I'd only been there once but it's the place I want o return to and build a house perched on the cliff above. I've even designed the house in my mind. The night my heart started beating rapidly (200 beats/minute) and I developed arrhythmia, I had to go to Play Gringa to escape the  scary activity in my room. The doctor on call kept saying I wasn't going to die, but I felt like I might. She told me she was going to infuse a medication that would feel like I'm drinking 100 cups of coffee at once. It felt more like a jolt of electricity straight to the heart and it didn't feel good. Hello Death. They did it a second time, and i drifted off to Playa Gringa once more. 

I survived that incident, just like the doctor said I would. I was probably closer to death years earlier when I'd had a 105.9 fever due to an infection in my catheter. 

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.

Sunday, July 1, 2012

Thank You Mr. President

You can say what you want about Obama--that's he's not a US citizen; that he's bad for the economy; that his health-care policies are going to destroy America. For me me and my family, he has: extended unemployment benefits when my husband was out of work for 9 months in 2009 (Thanks George, Cheney, et alia); made Cobra affordable so we could still keep our insurance (hey, I'm alive); eliminated pre-existing conditions as a reason to deny health insurance (hey, I'm alive); allowed coverage for young adults under their parents' policy until they're 26 (my daughter works in Peru for a non-profit that doesn't provide insurance for hospitalization or anything--nice to know that if she were in an accident or got cancer, she could be treated).

Oh dear, the Stock Indices were a lot higher on Friday. 

My husband has health coverage through his employer, a disastrous system that's allowed the cost of health care to skyrocket. He pays approximately 15% of his gross salary for insurance, co-pays and co-insurance. It's possible that next year his insurance won't increase under the new laws that some want to quash. That will be the first time ever that our health costs haven't increased at least 5% annually.

Health care and insurance drives our economy so it's hard to think about cutting that cash flow, but I'm willing to rob Peter to pay Paul if it helps the majority of American in the long run. Even those illegal aliens who pay taxes.

Wednesday, June 27, 2012

Nora Ephron Dies of AML-Related Causes

Every time someone famous dies of leukemia, it always takes me by the throat. I didn't read Ephron so much as know her name and the movies she directed. I didn't read I Feel Bad About My Neck, but I asked my dermatologist yesterday why my upper chest was so saggy baggy. He looked and me and said something about water retention. Sigh.

One unsightly body issue I've tried to assiduously avoid since I was 30 are saggy upper arms. Now it doesn't matter because my arms are huge and filled with fluid. Sigh.

 It's not that I feel worse about famous people dying of AML. It just reminds me of people I know who died and how I was in line to be another victim.

Monday, June 25, 2012

Sliced Again

On the way to yoga today I got a little misty. I'd been to my dermatologist for my 3-month check-up and he noticed a tiny suspicious spot on my lower left leg just above the ankle. He called it a mole; I saw it as a freckle. I have lots of those. He wanted to biopsy it. What could I say? He said no news is good news.

I've always understood that expression in two ways: No news is good news and No news is good news. To me, news is very rarely good or needed at all. It's usually just worthless information, or it's bad. Maybe 5% is truly good news. I'm an optimistic person who doesn't like "news" all that much.

The nurse today said a curious thing. After she asked me about all the diseases I might have to which I said "no," she smiled and said that I'm lucky to be such a healthy person. I'm lucky to be alive, but I'm not a healthy person. All you have to do is look at my pill organizer to know that.

I willed myself out of my funk and had a great yoga class. I managed to keep myself in the present moment and not dwell on the past or future. I wish I could live that way more often.

Tuesday, June 19, 2012

It's Nice to Agree with Your Doctor

I had a 7:30 appointment with Dr. Giralt today. My blood counts are good, and even my liver enzymes are on a downward trend. He's not really a numbers guy though. He asked me how I was feeling compared to our last visit 6 weeks ago. I general, I feel pretty good, but I do have some issues that bother me. Water retention is probably the worst. I tipped the scale at 140 this morning. If I had to guess, I think I weigh around 130, maybe less. Then I mentioned mouth tenderness, bone pain and increased itchiness on parts of my body that never itched before, phantom zones where the skin looks perfectly fine but feels like it's being gnawed on by red ants.

We have 3 choices, the doc said. Do nothing, reduce the Gleevec by half, or stop taking it. As much as I'd like to stp taking it, I knew he was for reducing it. I'll take one every other day and see him in 4 weeks.

I was home by 8:15.

Wednesday, June 6, 2012

Rule of the Bone

Gleevec has been a miracle drug for people with CML. CML is a slow-moving leukemia, as opposed to AML, which is what I had. My doctor put me on Gleevec to see if it would help with my chronic skin and liver issues, something my donor gives me in exchange for keeping my blood cancer-free.

I started Gleevec in early April. Five hours after taking the first dose, I woke up with extreme bone pain in my pelvis and legs. 1000 mg of Tylenol helped, but I didn't sleep much. This pain comes and goes in different bones of my lower body. I can manage it, usually.

Water retention has been nasty. I take 40 mg. of Lasix every other day. At this point, it barely makes a dent. My hands are puffy; my arms thick and hard. I weigh myself every day. Today I was just under 140 lbs. My "normal" weight is around 130.

My gums have been tender and I've had a few mild mouth sores, which means Gleevec is suppressing my immune system. 

I hope the drug is helping my liver enzymes. Since Saturday, I've had extreme bone pain in my right leg. I thought it was shin splints because I'd walked a lot all day in improper shoes. But it was only the one leg, and only hurt when I walked. Yesterday it was so painful (8 on a scale of 1-10), that I broke down and took 5 mg of Oxycodone. That was after the icing and 1000 mg of Tylenol failed to put a dent in the pain.

In 20 minutes the pain was gone. I could cook and walk the dog and get from one room to the next without wincing. But I can't live this way.I don't dare go jogging. I can probably take a yoga class.

We'll see what my doctor thinks in 2 weeks. I will have been on  Gleevec for 11 weeks. These side effects are a lot to pay if there's no improvement in my liver numbers. My skin is as bad as it was, even more itchy.

Friday, May 25, 2012

The Country Life is the Best Drug

My medical issues don't disappear in the country, but beauty and restfulness go a long way to mitigate some of them. The Gleevec is kicking in. On a cellular level, it might be working, but from what I'm feeling, its side effects are making me wonder just how long I'll stay on it. That will be for the doctor to decide.

Water retention (a lot--10 lbs.) and mouth sensitivity for the first time since the chemo days are the main complaints. My skin seems no better than it was. I'm wondering if I should be back on an anti-fungal since my immune system is allegedly being compromised further by Gleevec, which the mouth soreness attests to. 

Manhattan has its distractions but most of them cost money. At Green Acres, there's plenty to keep you busy that don't cost a thing. 

Saturday, May 19, 2012

Theater of the Absurd

My PROSE lenses, which allow me to see painlessly much of the time, made a fool out of me yesterday. I was popping them in when the phone rang. Instead of ignoring the call, I jumped up and ran into the other room to answer it. The problem was, my left lens had fallen somewhere in my haste. I crawled around on my hands and knees, searching every nook and cranny for this wildly expensive lens. Marty searched, too, and he is relentless in all he does.

Right lens in, we drove to the airport where Marty caught a flight to Florida to visit his mom. On the way, I called the Boston Foundation for Sight and arranged to have another lens made and shipped to me. These babies cost $750 each, of which insurance may or not pay part oft. When we got to the airport, I said to Marty that since my left eye was killing me, maybe I actually still had the lens in the eye. I used my little device to root around my eyeball, and lo and behold, it was in my eye. Even making it moist didn't feel so great, so I remove both lenses and put my glasses on. I was driving up to the country and wouldn't drive with just one lens. I also called BFS and told them to cancel my order because I'd found my lens in my eye. They didn't seem surprised. I guess their patients do wacky things like this all the time.

I didn't know whether to laugh or cry. Does anybody?

Monday, May 14, 2012

Meet My New "Therapy" Dog

Buck and Me

We've had Bouviers de Flandres for over 26 years. When Turbo died, we were without a dog, but thanks to my husband, only for 5 months. He saw a dog he liked on the American Bouvier Rescue League site
Buck is 2.5 years old and is the biggest ball of fluff we've ever had.

Dogs have the amazing ability to bring a smile to your face, even if you're not feeling so hot. I brought a photo of our first Bouvier, Spree, to the hospital when I had my first baby. When I was in recovery from chemo treatments, my faithful companions were Turbo and Asta. Asta died just before my 2nd transplant. Turbo lived to be 14.5. That's ancient for a dog.

Buck's good points are that he's house-trained and has a laid-back personality. He's a quirky one though, preferring women to men, which means he "guards" me if there's an unknown male in the room. He's a rescue dog because his owner/breeder died recently. Buck also has an eye problem, which makes him clumsy and a bit skittish if someone suddenly approaches him from the left side. He likes to eat shoes. The first night, he munched on one of Marty's old deck shoes. Last night, he destroyed one of my very expensive Arche shoes. We've bought him chew toys, but realize he can't be unsupervised at the moment.

Buck is currently by my side, keeping me company and making me smile.

Wednesday, May 9, 2012

The Survivor Tree

The Survivor Tree at Ground Zero

On a trip to the Museum of the Native American in lower Manhattan yesterday, Marie and I stopped in my old neighborhood for lunch and to see my former apartment building. So much has changed in the area in the year we've been gone. Two blocks from Ground Zero, buildings are springing up like newborn foals, not just within the Ground Zero confines, but all around the area.

We decided to take the free tour of the site since it wasn't crowded. Even though there's a lot of building going on, with jack-hammering and whatnot, the site was quite serene. The names of those who died are cut into stone facing waterfalls pooling into ponds and recirculating.

New trees are planted everywhere, 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.  

Friday, May 4, 2012

New York Times Blog You Should Read

A friend of mine from Rhode Island who was often by my side while I had various leukemia treatments, recommended this blog to me:

For many of us, the photos are difficult to look at because they bring us back to a place that was nightmarish. I feel so lucky to be alive.

Thursday, May 3, 2012

Be the Match

I wouldn't be here today without a total stranger registering to be a bone marrow/stem cell donor. My donor, who has remained anonymous, spent two days donating peripheral stem cells.

My husband is on the registry, as are my daughter and youngest son. I urge all of you who read this blog to register if your health allows it.You could save a life.

Please visit

Click now before you forget. Thanks.

Friday, April 27, 2012

Ronni's Right

Thank you, Ronni, for bringing me down to earth regarding self-medication with Lasix. I called my doctor and was squeezed in today for blood work and an exam by the NP.. Blood was wbc 7, hg 13.2 and platelets 200.

It turns out that Gleevec can cause water retention. I've been on it for 3 weeks. The plan (doctor-approved!) is to take 40 mg of Lasix every other day through Tuesday, along with potassium. I'm to weigh myself everyday and track it. This makes sense. It will also make me feel less like the Michelin Man.

Monday, April 23, 2012

Self Medication

Suddenly, my hands were puffy and my arms heavy and tight. Let's not even talk about the bulging in my lower abs. What abs?

Hmm. I gained 5 lbs. over the weekend without a change in diet, activity level or calories.

Should I call my oncologist or nurse practitioner to see if they think I should take some Lasix? Are you joking?

I just popped two 20 mgs..

And yes, I took a potassium pill.

Tuesday, April 10, 2012

Many Appointments; All Go Well.

I was having bloodwork and vital signs before 7:30 am. My oncologist took me in early and reported that my blood counts were great, and that the tight skin on my arms seemed softer. This must be due to the tacrolimus ointment I've been rubbing on them. He cut me back .5mg/day on prednisone, added Activel for my liver, and gave me a script for Gleevec, a drug used by CML patients,but now showing positive results for cgvh like mine. No drug is without side effects. Gleevec can make you tired and affect your blood counts in a negative way because it suppresses the immune system.

After I saw my doctor, I had a pulmonary function test, an EKG and an echo-cardiagram. These were baseline tests since I'm with a new set of doctors.

One doctor I'm staying with is my ophthalmologist. I saw him yesterday. I'll have cataract surgery on my right eye July 25, with the left eye to follow 1-2 months later.

My final appointment of the day was with my physical therapist, Linda, who has helped me tremendously in just 2 sessions. My former onc. said nothing could be done about the tendon/muscle tightness in my arms. But she was WRONG. My PT says most of my tightness is due to scar tissue building up where my catheter had been inserted for photopheresis. It was in for a long time. I'm using special scar bandages and Linda is working on my pectoral muscles to stretch them and try to break up the scar tissue. She's also noticed that my clavicle and ribs don't move as well as they should. My left side is also affected by these bone issues.

Somehow, I managed to go to yoga this morning. The iced coffee is delicious and typing doesn't tire me much.

Wednesday, April 4, 2012

Painkiller Not Required

The tooth extraction was a breeze. Lydocaine and laughing gas made it easy. The doctor did a little bone grafting (bone from a cadaver--no DNA he assured me) and I was stitched up and sent on my way. Eventually I took some tylenol, but it didn't hurt much. I asked for the gold back since Marty might be able to make me earrings from it.

The physical therapy appointment was interesting. All these years I thought I had a rotater cuff injury but I don't. I have very tight pectorals which restrict my movement. To get my strength back, I need to stretch these muscles, which is why I'll go to a number of PT sessions. Also, my ribs don't move much when I breathe normally, so I have to work on deep breathing. The therapist expected to find tenseness in my neck but didn't.

My new PROSE lenses with the higher prescription arrived and I wore them yesterday. I can see much better but they still fog up from debris, which I can whisk away with a q-tip and some saline. Don't try this on the subway.

Friday, March 30, 2012

It's No Wonder I can't See

I went to the Boston Foundation for Sight Wednesday with high hopes. They'd re-plasma my lenses and check my eyesight and all would be well. But I knew that all would not be well. My vision had been getting worse, which I attributed to the debris building up on the lenses. But even when I first put them on, I couldn't focus clearly on long distances.

Diagnosis: cataracts. Another older person's disease to add to my collection. When I had radiation before my second transplant, they told me cataracts were a possibility. Sigh. At least it's something that can be fixed. I'll have it done in New York, one eye at a time. Maybe by the summer I'll be able to see clearly.

Does this get me down? Of course. Next week I'm having a tooth pulled (not related to gvh, but still), and I have a mild cold which is just enough bother to pull me down another small notch. Fear not, comrades. The cold will go away, the pulled tooth will be replaced by an implant, and those nasty cataracts will be a thing of the past.

Stay calm and carry on.

Monday, March 26, 2012

New Skin Doc

I went for a skin check at my new dermatologist. I liked the old one well enough but want to use the doctors at Memorial Sloan Kettering so we're all on the same page. My diagnosis of melanoma in October means I have to be alert, and have my skin checked every 3 months. I also have to examine my own skin to look for anything suspicious. I'm good at this. When my former oncologist said it was chemo burn, I went to the dermatologist myself.

Dr. Mario Lacatoure (I keep think "locatelli") said there was no sign of cancer on my skin, but he was going to prescribe various ointments for my skin tightening and flakiness. I'll give it a try, especially if I can ameliorate the rock-hard feeling in my arms and mid-section.

Tomorrow I head for Rhode Island to stay with my friend Sue. On Wednesday I have an appointment at the Boston Foundation for Sight to see why my new lenses are misbehaving. It's always something.

Monday, March 19, 2012

Hey, I'm Getting Better

My new Nurse Practitioner Christine called me Friday afternoon with the results of my blood work. I had a fasting cholesterol count and I'm way down, from 250 to 167. My good cholesterol is a whopping 141. I'll stay on the Zetia but I've really made progress and I don't think it's from the drug alone, which I've only been on for 3 weeks.

Another sign that I'm healing is that my thyroid level was very high. I've been on 137 mcg of synthroid for 2.5 years. I thought my thyroid was shot but it's not. My TSH level was very low, meaning I've been taking too high a dose. I'll get new rx today.

Liver numbers are still funky. One (or 2) things at a time.

Thursday, March 15, 2012

March Madness

This morning, while I was waiting in my car for alternate side parking to be over, I felt a strange lump on my left thigh. Naturally, my first thought was leukemia cutis, which I'd had before and which signaled my 3rd relapse. I thought about the lump on and off through yoga and immediately checked it out when I got home. There was nothing there.

Of course there was nothing there. But I'm gun-shy in March. Call it March Madness. It was in March 6 years ago that I was diagnosed with leukemia. I never liked March. It's neither here nor there. Bulbs bloom and a string of warm days makes everyone smile, but it's a brown, ugly month, last years' dead sticks you neglected to pull mocking you from every corner of the garden. The Ides of March sit sentinel to warn you that winter is still here and snow might bury you yet.

March isn't all bad, of course. There are some great birthdays in March, my daughter's, my friends Karen's and Patty's. There's St. Patrick's Day with corned beef. There's that college basketball tournament that to me is duller than dishwater--I don't have a horse in the race--but exciting for a lot of fans. There's much beer to be had in the month of March, and a lot of unnaturally green food.

March, you don't scare me any more. At least not until next year.

Thursday, March 1, 2012

Dr. Girault is a Gem!

I had to wait a long time to see Dr. Girault but it was well worth it. He has lots of ideas for treating me. He apologized for not dressing up to see me but he'd just done a bone marrow extraction. I was sitting there in a gown and quipped, that's okay, this isn't my best look. He has a sense of humor.

Memorial Sloan Cancer Center takes a holistic approach to patient care. I'll be seeing a survivor counselor, a dentist, a dermatologist and have a pulmonary function test. I'll stay with my current internist for basic care. I'll meet with the Nurse Practitioner in two weeks. In six, I'll meet with Dr. Girault again to set goals and make a treatment plan.

Everyone I met on the staff is really nice and seems to know what they're doing.

I'm so relieved about this move. I feel so positive. I can't wait to call my former doctor and tell her I won't be back.

Wednesday, February 29, 2012

Bone Density Increases!

Yes, it can be done. From last year to this, my osteoporosis has vanished and I now only have osteopenia. My secret? I take weekly fosomax, 1200 mg. of calcium daily and get plenty of bone-knocking exercise, like running and stair climbing (thank you MTA!). Let's not count falling off chairs or onto the street. Also, my mammogram came back normal.

Tomorrow I see my new oncologist. I expect good things.

Thursday, February 23, 2012

Sewing Rage

Have you ever heard of sewing rage as a defense?

Six months ago, I bought fabric to make curtains for two of the bedrooms in the country house. Just buying fabric is therapeutic for me. I took swatches and tried to coordinate colors. I lost the swatches, returned and bought what I think would look good. I have an excellent color memory.

A couple of months ago, I cut, pinned and ironed the fabric. Then I turned on my sewing machine, something I haven't done in a while. I bought this cabinet-model Singer for myself when I was 16. I never took sewing lessons, learning everything I needed to know about sewing in Home Economics. Yeah, I wanted to take shop, but I'm not that much into lamp-making. Making a stuffed dog and correctly carving a half grapefruit have made me more valuable. As a person.

I plugged in the machine. Eureka! the light worked. Then I tried stepping on the pedal. Nada. I went under the machine with my headlamp on and did some trouble-shooting. All I did was tighten the big transformer-like plug that goes into the machine and Voila! I was so tired from my efforts, I didn't sew a stitch.

It's been on my country To-Do list for a long time. Why was I putting this off? Did I think I'd forgotten how to sew? No, I'd forgotten that chronic graft versus host disease is a cruel master, making my hands shaky and no movement smooth. Also, my eyes are actually better for threading needles and other fine work without glasses or lenses because I'm severely near-sighted.

Today I was going to sew those curtains right after lunch. I went upstairs to the so-called (by the Realtor) writer's nook and set up the machine. For me, sewing is like riding a bicycle. I never forget what to do--and I'm happily off gliding over hill and dale. Never mind that the last time I rode a bike it ended in disaster.

I wound the bobbin. I threaded the needle. I put them both together and what did I get? Nothing. Something was up with the machine set-up, aside from needing to be WD-40'd. I didn't want to give up--and I'm not--I just needed a break so I wouldn't start crying or knocking back a shot of whiskey. I grabbed the machine manual and now that I've calmly reviewed it, and written this kvetch, I' will go back upstairs and try try again.

Friday, February 17, 2012

Almost Normal

I've just hired myself as personal physician for a lot of money. I'm feeling much better and have decided to ignore my oncologist's most recent recommendations and follow my own intuitive advice. Don't worry--I'm not doing anything crazy.

I've quit taking tacrolimus altogether, as well as the voriconozole which I was put on for fungus protection while taking the tac. My doctor told me to continue with it, that it can't hurt, unless you count visual hallucinations.

Two more big doctor complaints and then I'll shut up. A year ago, I went to a psychiatrist--the prescribing kind, not the therapy kind--and he told me to remain on a low dose of Celexa (an anti-depressant), but that if I needed a little more juice, I could try taking an Ativan or a half of one. He also said I could call him at anytime and discuss the situation. These few weeks have been trying, to say the least, and I have popped a few Ativan, maybe 3 a week. On Tuesday, I called my pharmacologist and left a message about how I was medicating myself and if he had any thoughts or concerns. I guess I should have said I was about to jump off the Brooklyn Bridge because he still hasn't called me back. I haven't taken an Ativan since Monday.

The other doctor who's raising my blood pressure is the liver specialist I went to see in the Fall who recommended a liver biopsy, as well as to stop taking my cholesterol medication because it affects the liver. I saw my internist last week (she's fabulous) and she wants me to go back on a similar drug, Zetia. She called the liver doctor 4 times and got no response. I sent Ms. Liver an email on Tuesday, to which she has not responded. I told my internist to write the new prescription.

I'm not advocating ignoring doctors' advice, You must, however ask many questions and raise doubts when you have them. This is difficult to do when you're ill and relying on the expertise of someone who's been trained to know more than you.

Medice, cura te ipsum!

Wednesday, February 8, 2012

My Life as a Zombie

My doctor continues to poison me. She told me to halve the amount of tacrolimus and start the voroconozole. After four days I felt bad so I reduced the tacrolimus to half of that, 2 mg. a day. I went for my bloodwork to see if the tac was at a therapeutic level. The next day, the office called to say I should stop the medication completely and come to be re-check the tac level. 10-20 is normal; I was at 30. Good thing I reduced the dose.

I have an appointment on March 1st with my new doctor at MSKCC.

Thursday, February 2, 2012

You've Heard This Before

On my Boston doctor's recommendation, I've called Memorial Sloan Kettering Cancer Center to schedule an appointment with a post-transplant doctor who worked at MD Anderson in Houston. I feel so enraged by my current doctor and her incompetent, though officious, staff, that I have to count the ways I loathe thee.

1. You put me on photopheresis for 9 months and recommended I stay on it for a year when it was obvious that it wasn't helping me. I finally quit on my own. They charge $6,000 a pop for those treatments.
2. You dismissed a dark spot on my cheek as chemo burn. I decided to have it checked by a dermatologist only to find it was melanoma.
3. You sent me to a liver specialist who discovered the reason for all the pain I was having in my side: kidney stones. I had blood in my urine, which was checked a number of times, but got no recommendation to see a urologist. Finally, I went to see my internist who referred me to one.
4. You agreed I should get a second opinion about my treatment, in Boston, which I did. That was in early November. I saw you twice since then, and you hadn't heard from my doctor, even though I knew he'd sent you his recommendations. Last Monday, you finally had the report. You prescribed a new drug, tacrolimus (Prograf) which is an immune suppressant. You agonized over the dosage, which is done by weight. When I took my first dose last week, I had a bad reaction, stopped taking the medication and called you right away. Your office manager took the message and said the doctor would call me back. The manager called me back to say I should stop the medication for a week and then take half the dose.
5. You should manage your staff more effectively. Communication seems to be lacking on both ends.

There. I feel better.

Thursday, January 26, 2012

Tacrolimus OD

I don't mean to be melodramatic, but it was disconcerting. I took my first dose of tacrolimus Tuesday night and got sick several hours later. I woke up feeling nauseous and actually vomited a little. I still felt queasy but went back to sleep. In the morning, I still felt odd, but got up and had some coffee. Like a good patient, I monitored my temperature throughout.

I went to the Internet for information on tacrolimus dosing. It was clear that I was taking too much, maybe double the dose I needed, maybe more. I skipped my morning dose and called my doctor at 9 am. I described my problem to her office manager, who said the doctor wanted to speak with me. Hours later, I called again and was told the doctor wanted me to stop the medication immediately. In a week, I was to re-start it, but at half the dosage she prescribed. Needless to say, my nausea was a sign that I was taking too high a dose. Never hesitate to question your doctor.

On another drug-related note, I got up this morning, and before I even made coffee, I started taking down the curtains in the guest and living rooms. They are washed, dried, and might need some ironing. This is what prednisone can do to you.

Monday, January 23, 2012

The Best Birthday

I just finished opening my birthday cards. Mariel called me from Peru; I missed Mark's call and Harry's calling later. I went for a massage and manicure this morning and tonight Marty's taking me out to Babbo, an Italian restaurant in the West Village.

I also went to see my oncologist this afternoon. We finally spoke about Dr. Antin's recommendations, and developed a strategy for combating my skin gvh which is getting worse.

I will increase prednisone to 40 mg from 20. I will start taking tacrolimus , an immune suppressant, again. I will take voriconozole, an anti-fungal. Am I happy about adding drugs and increasing prednisone? Of course not. But I understand I can't sit by and let my skin rot. It's not just the itchiness, which I can live with. I am the Queen of Cream. My skin is thickening, which means if you press on it, it feels hard and taut. The patchiness is also creeping up under my neck, which means the face is next and I won't have it. At least I now have an explanation (excuse?) for why my tummy is fat no matter how much abdominal work I do.

The meds can wait. The drug store has to special order 2 of them anyway. I'll start my new regimen tomorrow. Tonight I plan to continue having the best birthday I've had in a long time.

Wednesday, January 11, 2012

Latest Liver Levels

My doctor called today with my liver panel results. She's very pleased with the decline in alk-phos level, at about 575 right now. That's still too high, but we decided to do nothing further for now.

I had Moh's surgery on a basal cell carcinoma today. Everything went well, and I now have a puffy eye, cheek and the beginning of bruising. Some day, I will be beautiful.

Friday, January 6, 2012

3 Good Things

We returned from our trip to Peru, where we spent many wonderful days with our daughter. On the final day, Harry arrived and we all went out for burritos. Marty and I experienced a little altitude sickness, and climbing 500 steps was no picnic, but we really got a taste of the country.

For someone who's immune compromised, I did very well. My NYC doctor was worried about the problems I might face. She asked if there would be a doctor on the trip (n0) and oxygen tanks available if I got short of breath (no). Marty ended up with food poisoning on our last day. We weren't sure it was food-borne. The last thing I needed was to catch a vile virus. But I was fine and able to take care of him.

Finally, I drove my car up to the country today. I haven't driven long distance since last March.