Down But Not Out

Last Wednesday, I packed up the pieces of what had been me and went to see Dr. Shore, my oncologist. The only time I'd felt worse than this was during chemotherapy or transplant. I was so unsure of my psychological footing that I brought my friend Jeff along for cognitive and emotional support.

On the blood front, white cells are normal, reds are rising and platelets are falling a bit. I don't have leukemia. But I'm experiencing a significant flare-up of graft versus host disease. Mr. Donor's lymphocytes are giving my organs a hard time, targeting my skin and liver in particular. I'd been looking forward to ending my rocky relationship with steroids, but instead of finally throwing the bum out for good, I'm increasing my exposure from 5 to 20 mg daily. It's demoralizing.

After explaining why she wasn't happy with upping my dose, Dr. Shore suggested I consider a treatment called photopheresis. This is a non-toxic way to handcuff lymphocytes, but it's time-consuming in the extreme. I would have to go twice weekly for six to twelve months. I would be hooked up to a machine for four to six hours, have my blood sucked out of me, lymphocytes isolated and irradiated with ultraviolet light, and then have my blood pumped back into my body. All the sucking and pumping will probably collapse my veins in no time, so I would have to have a catheter inserted in my chest, which makes treatment easier but life harder. Back to line-flushing, dressing changes, possible infection, problematic showering and the creepy feeling you get from have tubes protruding from your body.

Obviously, this is something to chew on a bit. Dr. Shore told me to think about it and call her with a decision because she has to get the approval of my insurance company first. It must cost a fortune. Thankfully, an Arizona politician won't be deciding my case.

I just want to put all this stuff behind me and get on with my life but I can't. Rolling Stones tunes keep popping into my head: Shattered, Emotional Rescue, Mother's Little Helper, 19th Nervous Breakdown.

To ward off the latter, I'm taking the pharmacological route: 20 mg. of Celexa daily.

My Heart's Not Broken

I'm unraveling like a cheap sweater.

I saw the cardiologist today. Basically the old ticker is doing okay. Some slight "damage" but it's not broken in any serious ways. He didn't feel it was the cause of my water-retention, but advised me to stay on the Lasix until further notice. I don't have to tell you that taking a diuretic everyday is no picnic. But I guess it's marginally better than feeling like my skin is on too tight. He recommended I take a 24-hour urine test to check for protein and creatine, which could explain my muscle weakness. Or it could be inconclusive.

Wednesday I see my oncologist for a routine check-up, and will ask her about the urine test. I've started a laundry ist of symptoms because I don't want to forget ANY of my current complaints. What the hell is a laundry list anyway? You can research that on-line if you care. I took a peak at where the phrase comes from, but I'm language-obsessed.

Echocardiogram Results

The results are in: I do not have conjestive heart failure. But I do have two abnormalities that I need to discuss with a cardiologist. I asked my internist two questions: Are these issues related to transplant. Answer: Yes. Do I have to restrict my activities? Answer: No. I have an appointment on Monday.

Skin eruptions, muscle weakness and tightness, edema, liver problems, no thyroid function, dry eyes, sky-high cholesterol, cognitive issues, anxiety, depression. This is what I live with post-treatment for leukemia. 8 rounds of chemo plus transplant prep that included total body irradiation. There's no telling what might pop up next.

What's a 100-year old woman to do? Embrace the blues, as in the music. I've been listening to a lot of jazz lately and find it soothing.

A week in Paris could ease the pain of it.
All I care is to smile in spite of it.
--From Lush Life by Billy Strayhorn

I wonder if I could appreciate Paris in my current condition. A crunchy baguette and sumptuous pastry just might do the trick.

Why I'm Here

Sometimes I wonder why I've survived thus far. Good doctoring, the bottomless love and support of family and friends, my relentless nature? Beating a dead horse is a specialty of mine. It runs in my family. Our motto: never let it go.


Did leukemia take a powder due to my endless bitching about despising the disease. Even wicked stem cells must reach the point where they can't stand their inhospitable host anymore. Why won't she just shut up/give up already? We could mount another attack, but man, she's toxic. What about that radiation she willingly subjected herself to mow most of us down? Like a suicide bomber who miraculously survives the explosive device, she walked away with just a few burn marks.


I was reading today how the government is going to try to educate the public about what to do in the event that a nuclear bomb explodes nearby. The concern is that people will panic and do the wrong thing, which is to flee. What you should do in the event that you're not vaporized or turned into a krispy kreme donut? You should stay in your car, if that's where you are. Stay in your house/apartment/work location for several hours while the radiation radiates. This requires an equanimity many of us don't possess.

Here's what I'm going to do if The Bomb spares me. I'm going to make an extra dry Beefeater martini straight up and I'm going to party my brains out. Or what's left of them.

"Heart Failure"

Don't panic. I don't have heart failure, at least not yet.

So I go to my internist today due to ongoing water-retention issues, especially the Popeye arms. The doctor, whom I don't care for, asks when was my last echo-cardiogram. I say August 2009 when I was in the hospital for my transplant. He says: I'm going to send you for one due to the possiblity of heart failure. I probed a little deeper. Are you referring to congestive heart failure? Yes.

If I were a doctor, I might say something like this: Let's do an echo-cardiogram to rule out any possible heart issues. I wouldn't blithely toss out the phrase "heart failure" to a patient who's obviously dealing with some challenging medical mysteries such as sudden sky-high cholesterol and an iron-laden liver. I fully expect him to say something like, Patricia, you are going to die someday. Thanks for reminding me. Is there a test for that?

This is the same doctor who responded to Marty's complaint about headaches with: I'll give you a referral to a neurologist to rule out a brain tumor. We had a good laugh over that one.

So I have to find a new doctor. This one's clueless, and although he might be a really good physician, he gets my goat.

Mirror Mirror on the Wall

WARNING: Contains harsh statements. Humor has not been used to soften the truth or otherwise entertain.

I consider myself a moderate when it comes to vanity. Always in fairly good physical shape, and born with the kind of metabolism that lets you eat whatever you want and not gain weight, I've always looked good in clothes, and was able to wear certain timeless items for many years. I have a pair of pants that go back at least 20 years, and I may wear them to a party tomorrow if the excess water around my midsection cooperates .

My hair was always thick and healthy. I've worn it very short for a very long time because I never want to use a hair dryer ever again. Now I have someone else's hair, and I don't know what to do with it.

The skin on my face was always better than average, a little freckled but soft and smooth with no wrinkles. Overall, I looked younger than I was, a nice perk when you hit middle age.

Unfortunately, in addition to hitting middle age, I also walked straight into a ghastly disease that wreaked havoc not just with my insides, but my outsides, too. Weight loss and hair loss turned me into a POW, repeatedly. Thankfully, these were temporary conditions.

But chemo, it seems, has left some ugly marks on my face that aren't going anywhere. A fellow transplant patient and friend recently posted on how she feels about her appearance. Another posted about the classic moonface one develops on steroids. We try to be upbeat and season our posts with self-deprecating humor. Laughing is better than crying, I suppose.

Well, I'm here to tell you that I only look in the mirror when I absolutely have to, and then I try to focus on the specific parts that needs attending to, for instance, my teeth. In addition to a HUGE brown spot on my right cheek (chemo burn), I have an overall uneven skin tone, with red blotches smeared here and there from my hairline to my cheeks to my nose. Actually, my nose is okay. To add insult to injury, my face is covered by what looks like pale fur. At least I've lost the moonface, the steroids almost behind me, for now. I suppose I could apply gobs of pancake makeup to my skin and hope I don't look too garish. But I've never really worn make-up, and like the short hair, I've always taken every possible shortcut I could on the road to Beauty. It's not that I'm trying to ignore aging and the ravages of time. I'm trying to ignore how quickly I made the transformation.

Somebody's out there's thinking, oh, but beauty's only skin deep. Inner beauty is what counts blah blah blah. Excuse me, but do you live in America??? Somebody else is out there thinking, hey, it's great you don't have leukemia anymore and survived to grapple with the fallout. I actually tell myself this a lot. But it's starting to feel questionable as a way to cheer myself up about the many deficits (physical and mental) I face. Sometimes I feel like I've survived the Apocalypse only to find myself wandering in a Nuclear Winter waiting for the next weird/ugly/uncomfortable event to threaten me and make me wonder where this all ends.

Feeling Flu-ish

The Thanksgiving weekend in the country was wonderful. It was great seeing the kids; hearing how Harry is taking a computer programming class next semester so he can write a killer app, quit school and make millions; and listening to Mariel and Mark come up with ways to improve public education. This generation needs all the good ideas it can get.

Last year, I ruined the turkey. This year, I was back in form, and all my traditional dishes, including the bird, were yummy.

The low-dose lasix did its job slowly, so I felt much like a stuffed turkey for most of the weekend. All was well until about an hour after I returned to NYC with Turbo. I began to feel awful, like I'd been hit by a truck. I got into bed, shivering. The next day I had a doctor appointment to assess the water retention. When the doctor took my temperature it was 102.7. He thinks I have the flu even though I had a flu shot. He sent me for a chest x-ray, and gave me a prescription for Tamiflu. I feel much better now.

For the first time in a long time, my thoughts went to the Dark Side. The leukemia was back and the flu was proof. Of course this makes no sense, unless you've had the disease and it's taken you completely unawares in the past. Then, any little sign can set you off. Many of you know what I'm talking about.

I popped an ativan and went to my second doctor appointment of the week, to my oncologist. I was a Dead Woman Walking. When she read my blood counts, which were fine, the Grim Reaper turned and walked away, searching for the crosstown bus. The iron unload continues. I was at 8000 units and am down to 4000. 300 is normal. Prednisone taper continues.

I asked my doctor what she thought about me working full time. She didn't think it would be possible right now. She's right of course. If I had a job, I'd have been fired.

So, I'm fair. That's what my grandfather always said in response to inquiries about his health and well-being.

I'm Popeye the Sailor Man

Unfortunately, and despite eating me spinach, I'm not exactly strong to the finish. If you saw my arms though, you'd think otherwise. Last week, I bemoaned the spare tire around my mid-section. Then my ankles blew up. I noticed my arms were as thick as my husband's. I'm a small person, so this was a dramatic thickening.

A trip, once again, to my internist confirmed what I already knew: I'm retaining water for reasons we can only guess at. My metabolism has gone haywire. Drug tapers, additions, interactions. My doctor put me on low-dose Lasix for five days and a potassium supplement so the baby doesn't get thrown out with the bath water.

Now I'm the incredibly shrinking woman. I've lost at least 1 lb. and my arms, though still thick, are starting to slim down. I spent more time in the bathroom last night than in my bed, but I'll take sleep loss over popeye arms.

Cankles and Other Swell Side Effects

My shapely ankles have disappeared. That spare tire around my mid-section isn't from overeating or lack of exercise. Edema, my internist said yesterday. Maybe from going off the blood pressure medication.

It will go away, I know that. But this morning after breakfast, when I noticed that my right arm had a huge lump below the elbow and what looked to be general swelling, I panicked. I immediately got on my bed and put my arm on a pillow. This is what you do for swollen ankles, so why not? I called my internist and left a message. That he hasn't called me back says that he's not worried. The lump has gone away and the swelling is a little less.

Is it my kidneys, my liver? Both are being affected due to the iron-removing drug Exjade. Will these bizarre and worrisome side effects never cease? I feel like I'm trapped in my own little "House" episode. Treat one symptom, and something else alarming pops up. Yesterday, my internist handed me a referral slip for a urologist because I have white blood cells in my urine. In a previous check, there had been red and white cells. He also called in a prescription for Lipitor to help lower my cholesterol, which is slowly lowering itself since the steroid taper began. He also told me we would have to monitor my liver enzymes carefully because if they were to shoot up again, taking Lipitor can be dangerous. Oh jeez.

This really is a colassal bore.

10 Good Things

1. My liver enzymes are down and I can now be treated for high cholesterol

2. My blood pressure is so low, I can stop my blood pressure medication

3. The prednisone taper continues

4. I have normal platelets and wbc's

5. My hematocrit is slowly inching up

6. I discovered a way to instantly load my metro card

7. I emailed my kids motherly advice and they ignored me

8. I had a glass of wine with dinner and nothing happened

9. There's a warming trend in the weather

10. I didn't come home last night until after 11

As promised, some positive vibes. Also, the Exjade has landed. I've been off the stuff for a week (accidently left it at a remote location), and I just received another package. I will be drinking this nasty liquid when I finish this post. Actually, it has no taste but it does a number on my digestive track for which nothing can be done. I can now go back to being magnetic.

10 Things to Kvetch About

1. Not being able to use chopsticks due to neuropathy

2. Less body hair everywhere except on my face

3. Low blood-pressure wooziness while still taking high blood-pressure drugs

4. Pants not fitting despite no change in weight

5. Muscle weakness that prevents me from jogging

6. Joint issues that make using a can opener nearly impossible

7. Being so tired I just want to weep

8. Eye dryness that no amount of drops or flaxseed oil relieves

9. Craigslist job scams

10. The anxiety that hits upon learning that an actress has died from CML

To combat this negativity, I hope to post a different kind of list tomorrow that gives 10 things to crow about.

Class, a Review

It's a good thing I wrote this blog. I found myself taking a trip down Memory Lane, and realizing how much I've forgotten. For instance, I thought I'd been on steroids for a year. Trolling through the Plog indicates I started them in February of this year. It's (the Plog) scattered with unremembered details that made me smile, mist up and realize what a service writing this ejournal has been to me.

Funny, I was going to announce that the blog would be closed for renovation until further notice. I've grown tired of detailing drug woes, doctor appointments and eating issues. But then, that's the point, no?

No doctor appointments this week. No new meds. Jeffersonville, where I plan to spend mid-week, has no scale. I'll be free to do fun things like unpack and search for lost items. My cell phone doesn't work there and there's no internet. It'll be just me, Turbo and fresh (cold) air. I'll post when I get back.

Class dismissed.

The Exjaded New Yorker

I saw my oncologist yesterday and she confirmed that my blood counts are fine but my liver enzymes are not. This is due mostly to the high amount of iron stored in my liver, thanks to the transfusions I received over the past 4 years. She's putting me on a drug called Exjade, and if I can tolerate it ( i.e., it doesn't wreak too much havoc on my kidneys), I should be able to unload most of the iron within 2 to 8 months. This will not only help my liver, but will hopefully impact my chronic gvh and lower my cholesterol.

The other exciting news is that I'm reducing the prednisone from 30 mg/day to 20. I hope I notice a difference in sleepability. With luck, I'll be weaned in a month or so. Goodbye chipmunk cheeks.

It turns out that my doctor in Boston knew about the high iron levels but decided not to treat me or tell me. At first, this made me angry. My new doctor explained that I couldn't be treated for it back then because they were waiting to see if I survived the transplant and didn't relapse. Those scenarios would've made the iron overload a moot point. That's the silver lining in all this: I'm here, just weighted down with excess iron.

The Cheese Stands Alone

The good news is, I don't have leukemia or diabetes. What I have is complicated, according to my new internist whom I saw yesterday for a physical.

My health is like one of those children's songs with multi-layered parts. Think: Farmer in the Dell. I'm the chesse, and I stand alone.

Those not interested in medical jargon should skip the next paragraph, which will be most of you.

In a nutshell, I do have very high cholesterol, for which I can't take drugs or change my diet. The true reason is iron overload in the liver. I got that from the transfusions needed to boost my red cells over the last four years. Iron from the transfusions is stored in the liver. I've had about 100 of them, so my liver is heavy with it. The other reason for for my bad liver is chronic graft versus host disease. I thought it was just in my skin, but I was wrong.

I can't treat the high cholesterol until I address the iron and liver issues. See above. The iron will have to be drained out of me, which should help my liver function. Then I have to be patient until the GVH diminishes. When my liver straightens out, I can take Lipitor, if I still need to.

The Farmer in th Dell takes a wife who takes a dog who takes a cat who takes a mouse who takes the cheese. The cheese stands alone.

Hi ho the derrio.

That would be me.

No News

I'm fine. I had my cholesterol re-screened last week and no news is good news. I haven't spoken to my new internist but he felt the 564 reading was a bad test. I'm two weeks into my prednisone taper and my skin is looking good. Still can't sleep much at night, but I feel I'm eating less.

Speaking of not sleeping well, I woke up last night at 2:30 am and started worrying that I'd lost touch with people due to my laptop crashing with all the addresses trapped inside. If you have not heard from me via email in a while, this is why. I'm not trying to lose you. If you don't have my email and want to contact me, do it through my gmail account which you can get from this blog. Or leave a comment at the end of this post and I will respond.

I discovered a journal I was keeping back at the beginning of my leukemia days in March 2006. It has four entries; they are painful to read. I decided to start writing in the journal again, beginning with the fact that I'm still alive over four and a half years later.

Connie, you were so right about Hope.

I Have the Cholesterol of a Sumo Wrestler

The nurse practitioner at my new hematologist's office called to tell me that my cholesterol is quite high: 564 HDL. It usually hovers around 175.

She said I should contact my primary care physician, which I don't have here in NYC. I don't think my RI physician will want to deal with this over the phone.

I suggested that the prednisone has something to do with it. A quick check of the Internet confirms this may be true. Basically, I'm fat on the inside, but happily not on the outside even though I eat like a pig.

Next, I will develop diabetes.

Finally, My Appointment

I took the subway to 68th Street and walked and walked and walked. Fortunately, the weather was nice. I made it just in time for my appointment with my new Hematologist/Oncologist, Dr. Shore. Whereas Dr. Antin, my doctor for the past 3 years, is known for his asperity, and wastes not one second of anybody's time, Dr. Shore appeared to have all day to take my medical history and record my drug list, both of which could suck the life out of a normal person. It's my story, and even I was bored.

Once the data was entered, she examined me and pronounced the gvh of my skin to be improved to the point where I can reduce the prednisone I take for the condition to 30 mg./day. I was hoping for 20, but any amount is appreciated. My swollen ankle demanded an x-ray, although nobody thinks it's broken. My blood pressure was excellent, 114/70, but I still have to take the lisinopril for a while longer. I'll see Dr. Shore again in 3 weeks. Her goal is to wean me completely off the prednisone. I'm so down with that.

A lab technician came in to torture me. Normally, my blood flows freely, but I'd unaccountably turned into a stone, or at least a frozen bored mass. She had to stick me twice and wiggle plenty to find anything, and I left with an industrial-size bandage on the crook of my arm. All I can say is, ouch.

I bumped into my friend Dianne just as I got off the subway. Eight million people in the City and I come face to face with one of the 50 or so I know. There's no explaining this.

Marty and I unenthusiastically went to the gym. I made chicken curry for dinner, which was delicious. Then I went unconscious. Seeing a new doctor took a lot out of me.

I miss you, Joe.

Violent Weather and Tuna Noodle Recipe

I hope Marty's okay. He's probably on the subway and may not even know what's happening. Tornado watch, warning, drenching rain. The weatherman says he's never seen such a storm. I had to close all my windows, which face north. The storm is from the west so it's fairly odd. Just poured myself some rose from Provence. It's nice and dry, unlike the papers on my sill, and unlike Mateus that maybe you drank as a sophisticated young adult in the 70's. It's roasting in the apartment, but I hesitate to turn on the AC because I think it stopped raining.

Tonight we're having leftover tuna noodle casserole, a dish I haven't made in over 20 years due to kid restrictions. I had a yen for it over the weekend, and decided to make my own cream of mushroom soup, which I could never do before, but now, apologies to Warhol.

Half way through eating the casserole, I realized I'd left out a central ingredient of the dish--the tuna. Marty didn't notice it either. Marty claims he's adding a can tonight, but I'll have mine sans tuna. Canned tuna's not my favorite food. And who needs the mercury?

Here's my recipe. You can add tuna if you must:

Ingredients:
Mushroom cheese sauce. Whisk 2 tbsp. butter, 1 tbsp. flour in a saucepan with mushrooms. Add one cup of milk and 1 cup grated cheese of your choice. I used cheddar.
Mix until smooth.
1 pound bowtie or other pasta.
Sauteed zucchini or other veggies of your choice.

Assemble:
Butter a medium-sized casserole dish. Add sauce and veggies to cooked pasta. Top with melted butter, bread crumbs and tomato. Heat in a 350 oven for 30-40 minutes or until it makes noise. Marty topped his with french fried onion rings, which if you choose you can put on the casserole before baking.

Serves 4, More if you add tuna!

Really Big Cupcakes

I've been missing out on the cupcake rage. A cupcake the size of a Mini Cooper is not my cup of tea, mainly due to its extravagant size. Cupcake-shape bodies surround me and I admit to a little thickening in the region myself, although not due to cupcakes.

I went to see the doctor who delivered my children yesterday. I hadn't been since 1994. We were immediately recognizable to each other, and she still had Mark and Harry's birth announcements in my file. I had to tell the long story of my now 4.5 year battle with AML. God it sounds awful in the telling, especially to a medical professional. I'm still here, with minor bumbs and bruises. My blood pressure was high again since I've been off that med for nearly a week. Otherwise I'm in good girlie health. It's rare for me to show off photos of my family but I did. I brought one taken at my nephew's wedding that does us all justice.

Then I had a cupcake. I was looking for soft-serve ice cream on 8th Street but Circe snared me and I went into a shop where mega and mini cupcakes were displayed in all their glory. It was difficult to choose, but I went for the espresso beauty at $3.75. Mmmmm. After eating half, I felt nauseated and asked for a bag, not to barf in but to bring the rest home where I could enjoy it in several more sittings, perhaps with milk. Then I accidently took the wrong train and ended up in Brooklyn. Too much sugar?

Mark was coming for dinner so I swung into action making nachos and chicken curry. The curry was from a jar, thank goodness. Mark brought us up to date on his running, his classes and his extreme tiredness. He ate a lot of food.

We watched the Yankees lose to the Rays in an excellent game. I went to bed dreaming of cupcakes. Maybe I'll have another quarter tomorrow.

Canceled

My new doctor got sick so my appointment was postponed. This afforded me the opportunity to figure out how to do laundry, which involved adding funds to my wash card and other technical challenges. The rest was just schlepping. Being a washerwoman is hot work. I'd rather be poked with needles.

Today I'm making curried lamb meatballs for Mecca and Peter who made me so many yummy lamb dishes when I was visiting them in France this summer. I look forward to an afternoon of cooking and cleaning. Mainly, I want to attack the walk-in closet before it attacks me.

My dog Turbo has gone back to his old naughty self, dining from the bathroom garbage pail and re-visiting other gross habits. I take this as a good sign because he hasn't done these things since his soulmate Asta died last summer.

It is a gorgeous late summer day in Nueva York. All I can see from my window is more buildings. As my apartment is right next to Ground Zero, there's a lot of construction out there but I hear very little of it from my 8th floor aerie. A cool breeze wafts in, no doubt laced with asbestos and other carcinogens.

Somethings gotta kill you.

Overeating, Undersleeping and Other Excesses

We've been at my sister-in-law's house for a few days, visiting, eating, shopping and relaxing. I've managed to get up every morning to run, but it's been a struggle when I haven't slept well.

It's the usual medication issue, which has left me wide awake at 3 am and napping late morning. On Monday, I have an appointment with a new oncologist in NYC. I'll ask for a reduction in the p-zone, which I think will happen because my skin is much improved. If I can go to 20 mg. I think I'll be able to sleep better and not need to be nailed down during most of the day. It's great to have energy, but I've moved and am settling in so I welcome a downgrade in my activity level.

After 4 years in the womb of Dana-Farber, it will be interesting to go to a new hospital with new staff and new doctors. I don't look forward to reviewing the "story" but I'll have to at least give highlights. My records are being sent but I'm sure the doctor wants to hear it from the patient's point of view. I like to think they treat the patient and not the disease.

Here are 3 things my new doctor should know about me:

1) I have the survivability of a cockroach

2) I am knowledgeable and outspoken, and like to be involved in my medical care

3) I am starting a new life that has no room for leukemia in it

So there.

For Me

This is not the Pity Plog. I realized something today though that I want to toss out there. I'm not alone in this feeling.

Since getting together with Marty, I've almost always done and gone where he wanted to do and go. I moved to New York. I changed my religion (but not my name). I had children. The children have been the other major factor in why I don't usually make decisions based on what I myself want, but about what my family wants. We have moved due to Marty's job. We have moved to towns where the schools are good. In short, I'm living the suburban nightmare (for me), although only for two more days. Hooray. I've gotten to do some awesome things during this time (live in Costa Rica, travel), but we're talking about a few bones in a 35-year span.

Don't cry for me Costa Rica. This past Sunday, a wish came true for me. I moved into a Manhattan apartment, and while it's a fact that I'm moving to NYC for Marty's job, I'm not living in Brooklyn, which is where Marty and nearly all our friends thought it was the sensible (and cheaper) choice. On Saturday, we pack up this mad existence for a small house in a small town in the Catskill Mountains of New York State. It will be our weekend retreat. The best part about it is that I can walk to town, and all the services I need. No more driving three miles for milk.

The moral of the story is, if there is one, every dog will have its day. This is my day, baby

Dinner Party

Tonight we're hosting three friends in our new apartment. They delivered my chaise longue today, which I've been tempted to sit in for hours but I have fish to fry. Well, shrimp.

Lemon tart is on the dessert menu, I do have a tart pan, but the baking equipment I need is still in Rhode Island. I had to improvise. It was frustrating working without a net, but what the tart lacks in beauty it will make up for in taste, I'm sure. With drinks, I'm serving tortilla chips with various dipping sauces: salsa, guacamole, sour cream, refried beans, chopped tomatoes and onions.

The main course will be shrimp scampi over pasta, simple but always delicious. We will drink scads of wine.

I'm making myself hungry.

I'm Fine

I haven't posted in a while and don't want my faithful fans to worry.

Like the energizer bunny, I keep going. Call me the prednisone bunny. Speaking of the pred, now that I'm down to 40 mg, I'm sleeping a little better. Still need ambien to go to sleep, but listen to this. My doctor called my health insurance company and cleared me for 30 pills per month instead of 10 every 30 days. When I got the rx in the mail, I felt I'd scored big time. So, I should be good to go or not go, depending on what I need to do. Which is a lot. I won't bore you with the details. Just don't worry if I post less.

What I Learned Today

1. Waking at 4:15 am has its plusses.
2. Yoga is the answer.
3. Massage is a right.
4. College shopping with a 17-year old for 3 hours burns calories.
5. Boys takes just as long to buy jeans as girls.
6. Popcorn cracks your teeth.
7. Cancelling your dental insurance is a bad idea.
8. When your buttons get pushed, turn yourself off.
9. Giving away furniture is a gift to yourself.
10. You can never go to bed too early.

Thin Skinned

Those of you who know me personally know I'm as thick-skinned as an avocado, maybe a coconut. Now that the prednisone has fully corrupted my body, my skin is thinning out in places and bursting into red blotches. Last week, the blotches even bled.

So I'm walking down the street yesterday in Manhattan and I notice that blood is dripping from an area on my wrist that's had ugly red spots. I think I brushed it against something. A tissue immediately staunched the flow, but this was pretty ugly.

I was up half the night and then drove 3 hours this morning back to Rhode Island. I haven't stopped since, all due to steroids.

At least I remain leukemia free.

Great Counts and Drugs Changes

Taking a lead from Ann (and my friend from Western Mass.), I drove myself to to my transplant center today. The problem with driving yourself, is what do you do if something goes wrong? What if your blood counts are in the toilet and you freak out? What if you get 3 shots and your arms go numb? Well, we have to be fearless. We've been trained for this.

My counts were all good. My gvh of the skin looks better to my doctor so I'm down to 40 mg. of prednisone daily. My blood pressure, however, has been borderline high the last few months (stress?, meds?) so my doctor prescribed an alpha blocker. I'll be going to the Fire Dept. to have my BP checked every few days to see how I'm doing. I just hope the fire fighters aren't too hot, because that could affect my BP. But it could be fun, too.

Tonight I'm going out with my son Mark on a date. We're going to check out a new Italian eatery downtown. I just had a snack because he's running and I'm starving. I can be an embarrassment in the food department. Luckily, when Mark eats, there's no contest.

No Gifts, Please

I was listening to NPR yesterday where they were talking about the anniversary of the Hiroshima bombing. That's when I realized that it will be a year ago tomorrow that I had my second transplant. How could this have almost slipped my mind?

Well, I have been busy. I've been traveling and planning the rest of the month which will be filled with goodbyes, hellos and new experiences. I've been feeling bullet-proof, always nice. These are excuses, though, because if I allow myself to go back one year, the memories haunt me.

The transplant was supposed to be the 7th but there was a flight delay (isn't there always?). Marty was with me, and we'd been watching the Yankees pummel the Red Sox. At least we had a little distraction. Finally the cells arrived and after being pre-medicated, they dripped into my port and traveled through my blood. I didn't feel a thing, and I promptly went to sleep.

I have no specific plans to celebrate. Marty is home and a friend is visiting so we'll make a nice dinner and toast my donor. Thanks, mister, whoever and wherever you are.

My Trip In a Nutshell

I didn't stay out of trouble, but I had a great trip. The trouble involved a car breakdown, but I was able to speak Spanish with the mechanic and cell phones do save lives. Peter called the rental company and found someone to call me on my phone at the gas station, and he spoke English!!!

Barcelona was fantastico although I came to the conclusion that I don't like Spanish food that much. Tapas are not my favs, nor is paella, but then I had pretty bad paella. One of the highlights of Barcelona was putting my toe into the Mediterranean Sea and then sitting at a cafe on the beach drinking a sangria while a Bob Marley wannabee sang and played guitar. It was so fake it was real. The streets of the old city wreak of charm, and offer some wonderful shopping possibilities, including World Cup 2010 commemorative t-shirts. I only wanted to buy authentic Barcelona things, which I pretty much did: a leather belt for Marty, a orange leather handbag, espadrilles, ceramics.

The weather was great, my hosts most gracious. I'm working on almost no sleep and I have to say I feel pretty good. Very relaxed in fact.

I promise to post photos in the next day or two. I have to find the chip and right now, that seems impossible.

French Connection

The pool and the Pyrenees in the distance.

The compound

Live from L'Ousteau Magna, an hour west of Toulouse France, C'est le Plog!

I'm staying out of trouble (mostly) at Peter and Mecca's chateaux (really old but thoroughly modern) in the countryside. On a clear day, you can see the Pyrenees, which we can today. I will drive through the Pyrenees tomorrow on my way to Barcelona where I will spend two days speaking Spanish, eating tapas and drinking sangria.

I swear I will take my meds, stay out of the sun (will swim in the Mediterrean after 6 pm) and not talk to strangers. As it looks now, I'll have to get another suitcase due to what I plan to buy in Spain: beach towels, whole bean coffee, World Cup jerseys, and who knows what manner of ceramics and unknown junk. Now I can buy some local wine and put it in the suitcase, well-wrapped of course.

Carpe diem--what else?

No Miracles; A Great Time

A year ago we took a pilgrimage to Beaver Lake in Derry, New Hampshire to visit our friends the Crothers. A number of miracles occurred that weekend. This past weekend, we went up there again. No miracles this time, but then we didn't need any. A year ago I could barely walk. My sense of taste was shot and I was facing another transplant, my life hanging in the balance. This time, I ran around the lake, ate like we might run out of food, and drank like a pirate. It didn't hurt that the Crothers have the same Saeco coffee machine we have. If you've been paying attention, they were the ones who inspired us to purchase our new machine. I drink iced coffee as I write this.

Some of the other highlights of the visit included Marty catching a dinner-worthy fish, daughter Michelle driving up after work, and planning that Patty and Jeff would join us in New York for the Marathon Brunch in November. We will have a blast. We will also have great coffee. But you knew that.

Cappuccino

I apologize to all of you who are sick of hearing about coffee. What's it got to do with leukemia? More on that later.

The new coffee shrine has been working overtime. Mariel and Mark love to make their cups of joe in the morning or when they come home from work. I've been doing two each morning and making an extra to put in the fridge for an afternoon iced coffee. That's at least $10 I've saved this week not buying retail iced coffee.

This afternoon, it's dank and dreary. What better time than to have a cappuccino? I looked for the directions and couldn't find them so went straight to you-tube for a tutorial. I don't have the same machine as the ones they were showing, so I tried to figure it out for myself, which sometimes works. First I shot pure hot water into the milk. Wrong. Then I tried different dials and buttons but was still watering down the milk and not frothing it. Finally, I got the right combo and voila! a steaming mug of cappuccino with a dash of cinnamon on top.

Okay, the leukemia thing. Well, since I've been on prednisone, I've been very impatient about most things in life. I try to be gentle with humans and dogs, but there are thing that definitely suffer my inability to do things slowly, and with thought and care. Oh, I get a lot done, but much of it is sub-par. Not so with the cappuccino, I'm happy to say. Of course I probably should be drinking decaf but I seriously doubt that the amount of caffeine I'm getting each day has any additional effect on my speed.

Always look on the bright side ...

Ode to Coffee

I love coffee. Done well, it's the perfect beverage, even better than an extra dry martini. You may think I need a psych evaluation after you read about my latest adventure in coffee.

I think I can put part of the blame on my friends the Crothers who introduced us to a ridiculously pricey cup of brew last year before my second relapse. They had purchased a Saeco espresso maker at a garage sale and could no longer have coffee any other way. The machine is huge, has its own grinder and makes up to two cups of espresso or or one 8-oz. cup of hair-on-your-chest coffee in a single minute. You simply cannot resist this delicious shot of black liquid.

Mariel commented that the purchase and the size of the machine itself seemed unlike us. We are surely more quiet and unassuming than this monster would suggest. Some might justify the expense by saying they won't buy a cup of coffee on the way to or at work. A Starbuck's veinte can set you back a few dollars a day. But we always make our own coffee, except in restaurants, so that's a bogus argument for us. We just wanted a perfect cup of coffee and were willing to pay and give up valuable kitchen real estate to get it.

Come on over and I'll brew you a cup. I'll even let you have milk and sugar. The machine has a frothing wand, which I've yet to use, but means there's cappuccino in my future. Like maybe this afternoon.

Germ City

I've been in NYC since Thursday evening. I love this place, but it is a pigsty. The streets have I don't know what on them (better take your shoes off upon entering your abode) and every surface has been greased by the millions of folks passing by. We live at Ground Zero, so there's a steady stream of people beating the pavement, touching the subway rail as well as all surfaces in stores. I wash my hands compulsively when I return to my apartment, but I've inexplicably left the hand sanitizer in much cleaner Rhode Island.

So far, I've been fine.

Even Whole Foods has been a challenge. We bought organic spinach there to make for dinner and it had a live insect in it. Marty freaked out. You can't buy a nitrate to save your life at Whole Foods, but bugs are free on the salads.

My doctor has given me clearance to travel to Europe in a couple of weeks to visit friends in Toulouse. I didn't ask his permission; my concerned husband did. Said doctor and husband have determined that with liberal use of hand sanitizer, I should be fine. I should avoid unpasturized cheese, but that's a small price to pay for drinking good wine. And red wine is good for the immune system so I'll be sure to do a lot of it.

Join me on wordinthewoods.blogspot.com for more Manhattan Happenings.

Strength, Dori

This morning I heard from a cyber-buddy in Tennessee. He was writing to tell me his wife Dori had relapsed with leukemia. She had a transplant a month after I did in 2007 and has been fine since. This is a very late relapse, but it happens. I know Dori and her family are devastated. I still remember the cold fear I felt when I found out I'd relapsed. It's arguably worse than initial diagnosis because you know exactly what's coming.

Dori will beat the leukemia down and perhaps have another transplant. She's certainly strong enough, and has everything to live for. It is a nasty experience, but doable. Ann has had two transplants. I've also had two. Ronni has had three MUDs herself.

For now, Dori and Jim are going to make no decisions over the holiday weekend, just be together as a family. That's the best thing they can do, the best thing any of us can do.

Why I'm Not Thrilled About Summer

Today's the solstice. In my neck of the woods, that means 15 hours and 12 minutes of daylight. Except for early morning and late afternoon, I'm supposed to avoid being outside during that time. But I don't. Someone has to go to the bank and buy groceries. I put sunscreen on and a hat, and try to stay in the shade. Today I'm taking a walk in the park with a friend. It's fairly shaded, but if I wanted to be absolutely safe, I'd wear long sleeves and pants. Since it's supposed to be 90 degrees, that seems excessive.

The sun triggers graft versus host disease which is currently making a scene on my usually unblemished face and neck area. I look like I've either been in a fight or crying for days. A scaly rash paints the side of my face and tattoos my eyes with crescent moons. My lips are cracked and in constant need of petroleum jelly. The upside is that I'm alive and writing to complain about my dermatological demons. Whatever's attacking my face is making it hard for leukemia to gain a foothold. This I can live with.

All three kids are home. Harry starts a job tomorrow. Mariel and Mark have interviews this week. I will be abandoning them on and off for the next couple of weeks. Tomorrow I'm driving up to Rockport, MA to visit friends. Friday I head to NYC for a possible house closing in the Catskills and an anniversary dinner in Manhattan on Saturday. Then I plan to spend several days in our new house getting phone and electric service and finding a painter to so some minor work. We may rent a truck and move in the end of next week.

Then I will be living in three places. Three very nice places.

The Hungry Hungry Hippo

Mariel and I spent yesterday in Boston seeing doctors. Oy. Dana-Farber was okay. My counts are good (normal platelets for the first time since transplant). My doctor took one look at me and said: chronic gvh. It's official, folks. I'm fortunate that my donor is attacking me, and the skin is better than other organs such as my liver or gut. The bad news is, I have to increase the prednisone to 60 mg. a day and start taking rapamune again (1 mg.) I also have to continue taking all preventative meds because the pred and rapamune suppress my immune system.

60 mg. of prednisone is the most I've ever taken and I expect my appetite will get better than it already is. That means I will have to exercise more or soon look like a hippo. My half-moon face will be full moon in no time. If I'm lucky, I won't be on this dose for long. My donor will get the hint and behave himself.

I was still able to get my immunizations, three of them: DPT (diptheria , pertussis, tetanus); Pneumococcal Pneumonia; HIB (haemophilus B). I'll get more in two months.

Then it was off to Massachusetts Eye and Eye Infirmary for an appointment with an ophthalmologist who specializes in gvh. It was supposed to be nine minutes away, but that nine minutes soon became an hour as we repeatedly drove past the building on a Kafkaesque highway that seemed to have no exits. Mariel slept in the car while I spent two hours having my eyes examined by various technicians and doctors. The result? No gvh but plenty of recommendations for what I should do with my eyes. Mariel drove home, a rush-hour fueled nightmare of epic proportions.

Time for breakfast. I will be devouring blueberry buckwheat pancakes and then going to yoga.

Dinner with My Doc

We had dinner last night in Providence with my local hematologist-oncologist and his wife. I liked this guy from the day I met him. This was our first social visit.

We've spent a lot of time together and have come to know each other quite well. He has two kids the same age as my younger two and we've talked endlessly about the perils of parenting, college applications, majors and the like. He has a lot of angst on the subject; maybe he saves all the anxiety of treating very sick patients and transfers it to his children. I'm a lot calmer in this arena; maybe I spend all my anxiety on health issues and spare my children in some ways. I say some because I know they have not been spared.

In all the years he's known me, he's only witnessed one breakdown. I know how to control my feelings, even sparing doctors my black moods. Oh, I cried once when he wouldn't let me out of the hospital, but that didn't alarm him; it only made him feel bad.

I'll admit that seeing him dredged up a thick and disgusting stew of dark emotions, before and after dinner. What I usually keep the lid on rose up and hit me from behind. Ouch. Still, it was a very nice evening, and I'm glad we did it. Part of me hopes I never see him again, this man who helped save my life. It's too close for comfort.

Graduation Redux

Happy Family II

We've run out of children, finally. Baby Harry has been launched into the world. Marty's family came from Iowa, Florida and Pennsylvania to celebrate. Mine came from Long Island. We went to a local restaurant for dinner, so-called Tuscan soul food. It was a success no matter its origin. We came home for cake, a concoction called Death by Chocolate which managed to flatten several guests. Better to go by chocolate than illness or disease.

Now we can concentrate on the other exciting events before us. In no particular order, we have a house to sell, a house to buy, Father's Day, Birthday and Anniversary celebrations, a family vacation to Prince Edward Island in Canada, and seeing if hydrocortisone cream can get rid of the rash that's creeping around my face and neck. Next week I'll see my doctor for a check-up and he can decide if it's chronic gvhd or not. I'll be getting my first round of immunizations, too.

We're moving on.

The Graduate

Happy Family

Mariel graduated from Swarthmore College Sunday with a BA in Psychology. In addition to her diploma, she received a planting from the Arboretum, where she and every grad has a plant named for them.

It was a gorgeous day, hot and sunny, and the ceremony was held in the outdoor amphitheater. Highlights included watching Mariel receive her diploma, listening to excellent speeches, including one by Stephen Lang of Avatar fame and a Swat alumnus, and watching as light bulb-topped mortarboards of the engineering students lit up as they received their degrees. The final recipient, rather than a switch, had a twist-on bulb. Very Swarthmorean.

I will eventually add a photo of the graduate and proud family. I left my camera at my sister-in-law's house.

Probiotics

Everyone is so antibiotic, I wanted to give a shout out to probiotics.

Since I continue to have digestive issues, my doctor suggested I buy probiotics at the health food store. Some of us who've had chemo have been prescribed Protonix, a way of giving a foothold to the good bacteria that's been wiped out along with the rest of you. Since I did not want to take the Activia challenge because I don't much like yogurt, although I do hope Jamie Lee Curtis will consider playing me in the film version of my life, I headed straight to my local natural food mart and quickly saw I wasn't in this alone. There was a huge section dedicated to these products. A nice woman explained the how much and when I should take these babies. It turns out that if you are on antibiotics (which I am, as a preventative), you should take the pros a couple of hours later, and on an empty stomach. Five days into this thing, I'm feeling less gaseous but not out of the woods yet.

I do want to mention that I jogged a mile yesterday morning, slow and steady. My quads feel a little achy when I go down stairs, but I'm not complaining. Speaking of running, I picked up Mark from the train station yesterday. He'd gone on a road trip encompassing eight states, as far south as Arkansas and as far west as Indiana. He went with four other members of the Columbia track team, all done with school and taking a much-deserved break from running. We had burgers on the grill for dinner last night and he ate two. This is the former vegetarian who went back to meat last summer for protein reasons. He was never into tofu or rice and beans, and he didn't eat calcium-rich veggies.

Today is supposed to be what we call a scawcha in New York. That's "scorcher" in English. I just shut down the heat and now I'll have to crank up the AC if it gets bad. Harry asked me last week how people live in the South sans AC. Slowly and carefully, I told him. Do they wear suits? Only when they marry and die.

Steroids are My Friend

Ever since I stopped taking Rapamune (an immune suppressant) and V-fend (an anti-fungal), I've been getting nauseous daily, and I occasionally get as far as the old heave-ho. This week, digestive problems ensued. Basically, I feel slightly bilious all the time.

Could this be gvh (graft versus host)? It makes sense that if you eliminate the drug that was keeping your new immune system from doing naughty things to the rest of you (in my case, my digestive system, where I've had issues before) said system will begin to flex its muscles. Knowing that a little gvh may be a good thing, since it (the graft) should also attack other foreign-looking cells such as leukemic ones, I decided to soldier on and not complain. Then came the egg. In the wrong direction.

That's it. It's one thing to have the dry heaves; quite another to lose your breakfast hours after you've eaten it. Eggs apparently hang around for a while. I've tried to make this as tasteful as possible, given the subject. I promise it gets better from here.

I broke down and emailed my doctor. As much as I didn't want to increase the dosage of Prednisone (an anti-inflammatory steroid), I didn't want to feel queasy all the time either. Predictably, he advised me to go from 10 mg. to 20. This is not a high dose, but math whizzes may note it is double. Prednisone has been good to me, so I should not complain. It has helped me gain 20 needed pounds by tamping down nausea and reducing inflammation in my digestive track. It's filled in the sharp edges of my face, given me squirrelish energy and only destroyed a small part of my sleep. I have accomplished much with its assistance. I popped 10 mg. at dinner last night.

But as Prednisone giveth, it also taketh away. It's side effects can be devastating, but in small doses and for short periods of time, it helps more than hurts. So I'm sitting here listening to the early morning rain and the dog whine for his breakfast, and at the same time, writing and eating a banana. I'm starving, but this could be a mental response. It's as though the Prednisone were whispering in my ear: eat more; do more. You have two hands: use both. And chew while you sit there thinking and typing.

At least I don't feel bilious.

Senior Moments

Good-Looking Crew

Harry & Britt

Best Buds

Mutt & Jeff

No, I'm not talking about forgetting a word or a name or where you put something. That's for another post. Baby Harry went to the Senior Prom on Friday. He looked pretty dapper if I do say so myself.

The obligatory photo shoot at a beautifully landscaped East Greenwich home lasted a long long time. There were eighteen promers and at least thirty parents madly snapping away. I got a little bored and started shooting the limo, a stretch Ford Expedition. We once had a loner Expedition when our petite minivan was in the shop. I couldn't drive it because I thought I'd take out any unfortunate mailboxes or pedestrians in my path.

We hosted the post-prom party at our house. Marty drove back from NYC for the weekend, so he was here when the kids arrived. I was snoozing comfortably two floors up and heard nothing. Harry had a track meet in the morning, so they were all gone by 8:00. No photos of the party--Harry would've killed me.

Hospital Gowns

Call me crazy, but I've been meaning to write about hospital gowns for some time now. I'm tired of them getting a bad rap. Or is it a bad wrap? Turns out, according to a lone internet opinion, the correct phrase is bum wrap, which hospital gowns notoriously don't do. Personally, I thought the phrase was bad rep, and being the anal person I am (ahem ...) I was forced to research which usage was correct. I've lost you, right?

Hospital gowns are not known for their sartorial properties. They barely give coverage where some of us need it most. But they are designed that way. On purpose. They have all kinds of really important features, some to make life easier for medical staff, but some for the patient, too. If you're hooked up to intravenous meds and you wake up in the dead of night drowning in perspiration, you can unsnap a hospital gown and put on another without being disconnected. And they have a nifty pocket through which your line passes so that you don't have it snaking up through the top or down under the bottom of your shirt.

Well, you might be thinking, I didn't have an intravenous line, so why should I have to be subjected to this poor excuse for pajamas? Surprise! You can wear your own pajamas, although they might get a bit of bodily effluvia on them. If that's not acceptable, you can wear two gowns when you go out into the hallway for your exercise. Or a robe. Why not don a cool pair of hospital pants with a plain t-shirt and pretend you're a member of the staff? You see, there's nothing to complain about and much to be thankful for.

I'm currently reading a book that blathers on about hospital gowns, an otherwise good book that got my ire up. It's not even the patient's opinion. That's what kicked off this diatribe.

Thank you for putting up with me.

Chicken Parmesan for the Soul

I went to my internist yesterday and he heard nothing untoward with my lungs or heart. He gave me extra-strength ibuprofen and a script for a chest x-ray. After a great night's sleep, I woke up and realized I had no pain. Could this be why?

Show 'em how it's done, Harry.

Cutting the cheese

Frying the cutlets

Showing off the finished product

Voilà

If It's Not One Thing, It's Another

So far, the celebration has been muted, although I did have my first martini Friday night. I also worked out at the gym with Marty, cooked a delightful meal (shrimp scampi), watched the Yankees trounce the Red Sox, and even went out for a post-prandial stroll along the Hudson.

It all started when I began feeling nauseous on Wednesday and threw up walking Turbo, who was unfazed. I started feeling terrible after that and had to leave my yoga class early. Thursday I woke up with chest pain on my right side, no other symptoms. Dr. Antin thought I might have pleuritis and said I should use analgesics.

I took the train to NYC Friday morning, feeling pretty bilious. Took a cab to the apartment, which even at $20 was worth it. I had a bowl of rice chex and and had to wait for the phone guy to come. I dashed out to return some shorts to Century 21 and make a few odd purchases at Bed Bath & Beyond.

After bailing the car out of the garage Saturday, we drove to Princeton to pick up Mariel at the train station. We then went to Princeton University to watch Mark run the 1500. At this point, I must add that when I went to pay for a two-day entry pass, I saw there was a half-price discount for Seniors. Yes!!! It never felt so good to be so old. Nevermind that two bananas cost $2 and two pretzels, $5. My niece Gabrielle and family came to watch, and we went out for lunch afterwards at a brewery. I had iced tea.

I started feeling really bad, tired and physically out of sorts. We checked into our hotel, and I proceeded to sleep for three hours. I woke up feeling crappy but hungry, a good sign. We ordered Chinese food and ate pretty well. I was zonked again by 11:30.

Fortunately, I woke up feeling much better after the rest cure. We had breakfast; Marty took Mariel back to the train; we headed to Princeton to watch Mark in the finals. We met other Columbia parents who seem like us. The woman behind me was whistling like a construction worker. She's the mom of another Freshman Lion. Mark got 6th place and earned a point for his team. He also got a nice medal. We got stuck in horrendous traffic heading into the Holland Tunnel. I just missed my train and had a light dinner at Grand Central. Harry, who was going to prepare a Mother's Day dinner for me, decided it would be better to do it tonight instead. He also gave me a gift: a George Foreman mini grill, which Marty and I will put to good use.

Dr. Antin agreed I should be seen by a doctor. I went to my internist this afternoon. He could find no symptoms of pleuritis, but ordered a chest x-ray just to be safe. No rush; I'll probably do it tomorrow or Wednesday, depending on how I'm feeling.

In case this is too downbeat for you, I'm adding a picture of me toasting you all, one of the girls and one of Mark getting his medal.

L'Chaim!

Gabrielle, Mariel holding Dahlia, PJ

Mark getting his medal

Cheers

I'll have an extra dry Beefeater martini with a twist.

The good news out of Boston today is that I'm stopping the immune suppressant Rapamune, as well as the anti-fungal voriconazole. It's my choice as to whether or not I start tapering the anti-depressant I've been on since the bad old days. It's the Rapamune though that will allow me to have my Friday martini whether I need it or not. I've had an unauthorized glass of wine here and there, but Marty gives me a parental look when I do. I'm not planning on getting blasted or anything, but it's nice to know my liver is all mine.

Dr. Antin and I mostly chit-chatted about vacations, living in Manhattan, and real estate. My blood counts were good. He didn't give me a print-out but it's something like this: wbc= 9; platelets= 121; hematocrit= 27.8. The red cells are low but my reticulocyte count is normal which means I'm making red cells but using them up. As long as my energy's good, it doesn't really matter.

We drove back home and Jamie suggested we have lunch at Tio Mateo's. We were both starved. She offered to buy me a beer, but I passed. Suddenly I realized it's Cinco de Mayo tomorrow, but Marty the Margarita Man is in Manhattan.

Here's to you, Marty.

Cancer Check

Last time I had a mammogram, in 2008, I was sent to Women's & Infant's Hospital for special diagnostic imaging. The result? Minute calcifications in the left breast. It was probably nothing, but just to be safe they scheduled me for a follow-up in May 2009.

In May 2009, I was working on my third relapse. Getting a mammogram was the last thing on my mind. My doctor called me to encourage me to go, but I explained that beating leukemia was my first priority. I figured I was getting enough toxins and radiation to hold off breast cancer.

When I read an article that Martina Naritalova recently had cancerous calcifications removed from her breast, I called to make an appointment for my follow-up. Except that Martina had been a guest at my house for a Marathon brunch, I never would have clicked on the article. Isn't it funny how we connect the dots of our world?

Today was my appointment and I'm pleased to say they saw nothing to worry about. The technician apologized for the discomfort she put me through, but I assured her that I wasn't bothered by it at all. How can I complain about a little breast wrenching after what I've been through.

Martina and I are cancer-free.

April 14, 1985

This was one of the worst days of my life. I was watching baseball in my brother's living room in South Florida. It was a beautiful day--sunny, dry, in the 70's. The phone rang and my brother answered it. The death watch was over. My mother's body had shut down a week after what the doctor claimed was successful surgery for lung cancer. I'd flown down a few days earlier and couldn't recognize the yellow swollen body on the bed. Hair unkempt, wearing a hospital gown, and without make-up. This simply could not be my mother.

Her kidneys were failing. I called her internist, whom I met once before. I asked what her chance of survival was. 10%, he said. I crumbled. So this is how it ends.

The next day was a blur. People called. Relatives drifted in. My father was a basket-case. We went to the funeral home, me clutching the outfit she was going to wear. I chose the dress she wore to my wedding. The color did not flatter, but I was sentimental. The casket was closed and she was cremated so the outfit didn't matter. No more clothes shopping. My aunt and I cleaned out her closet. I took many sweaters and some handbags, some of which I still use.

She had a full funeral mass, and afterward the immediate family went out for lunch. There was no burial service. The next day, my brothers and I picked up the urn and drove to the cemetery. After reading some poetry we'd selected, we left the urn by the graveside and drove away.

Last year, I went to the dermatologist on this date and had some suspicious spots biopsied. Two days later, twenty five years after we'd buried my mom, I found out that one of the spots contained leukemic cells. Another year, another nightmare.

Today I feel pretty good. I'm cancer-free and plan to stay that way.

You don't get to choose how you're going to die. Or when. You can only decide how you're going to live. Now. Joan Baez

Update on Immune Scores

Just heard from my doctor that my cd4 count is 123 and my igG is 438. Normal for cd4 is 250-300 so I still have some building to do. IgG is good.

Taking the Big Apple By Storm

My doctor never gave me my cd4/igg count so I assumed they were decent. He knew my plans to take a train so I'm sure he would've let me know if there was a problem. I will email him later.

Thursday night I took the train into Penn Station which was abuzz at 10:45 in the evening. Marty met me and we hopped on a subway to Brooklyn. The train was unbelievably crowded--no seats but no coughing either. I got a good night's sleep and was ready to find an apartment in Manhattan. With Marty as my guide, I took the right train to the financial district where I was meeting my broker at 10:30. I walked around the neighborhood to get a feel for my new life.

Impressions: loud, noisy, busy, young. I went to Starbucks to recharge my battery. I met with Liat, a young hip Israeli woman. We made quite a pair. We saw 10 apartments in two hours. Frankly, they all seemed the same, very stylish but very small. I made mental notes of what I liked and didn't like. I was able to select three that would be suitable, a true two-bedroom as first choice, a converted two as second and something else I don't remember. We put in applications on number one and two, although number one already had an application in so I was unlikely to get that one. We saw a few more places and then I went for lunch in Battery Park City.

Battery Park was another neighborhood I was interested in so I explored a bit. Impressions: windy, young, quieter. The riverside park is a big draw with its biking path that reaches to upper Manhattan, dog runs, great views and atmosphere. I missed the World Trade Center site so did not see the gawking tourists who descend like flies each day. I was exhausted by this point but I went to see Liat at her office and she took me to see two more "residences." Limply, I caught the subway and returned to Brooklyn where I rested until Marty came home. We went to dinner with friends in a local restaurant where I didn't know the names for half that was on the menu. That's another story though and I will save it for another post.

We got up bright and early on Saturday morning. Marty went to the corner for some coffee, and we were picked up by Sandy at 8 o'clock. He took us to one of his nearby buildings where we could rent an apartment with two bedrooms and a dining room for less than we'd pay in Manhattan. It was tempting, but only for a nano second.

Breakfast at Juniors with Dianne was great as usual. We drove around the downtown Brooklyn waterfront where luxury condos prayed to the Great Realtor in the sky to bring him clients who couldn't afford Manhattan rents. We tried to see an apartment but it was still early so they drove us into town and we started checking out the area. We were fortunate to be able to get into see the apartment I liked second best. This is because the concierge remembered me! We went up to the apartment, located on the 14th floor near the laundry room. This was the first apartment Marty saw and think he was underwhelmed. I took him around to see all the nearby restaurants we'd be eating at, including a real diner less than a block away. We weren't meeting with our other broker for a bit saw we walked three blocks to South Street Seaport to look around.

We arranged to meet Edward at a building on West Street and headed over to Battery Park City. Tourists were so drawn to the dead meat New York City cops had to serve as swat teams to keep the area flowing. We met our broker and he took us to see three apartments at 75 West Street. The building is known as Post towers, having been the home of the New York Post for many years. It's an older building, thoroughly renovated with the units being both bigger and cheaper. The one we liked best has two walk-in closets, a nice light-colored galley kitchen that opens to a big living area. The bedroom is large and has one of the closets. The bathroom is marble and tile with new fixtures. We liked it better than the one I applied for on Friday so we put in an application. We should know in a few days if we are approved. The move-in date is May 1st.

Because we'll just rely on cell phones, we will not have the prestigious 212 area code. You'll have to come see for yourself that we do indeed live in the Big Apple. My children don't understand what's gotten into their parents. It's good to keep them guessing.

Gardening for Transplantees

Two Narcissi

Mountain Laurel

Flopping Hyacinths

My Serenity Garden

We had to remove a dead weeping birch from our front lawn over the weekend and reseed the area. We've never had much of a lawn because we don't like to use chemicals. Usually when we seed, the birds eat it all up and we have next to nothing to show for our efforts. Since this was a small area (and we were doing a few other barren patches) we decided to get some burlap to protect them from the enemy.

I went to Home Depot on Monday. How could I resist the perennials I did not need to buy and really shouldn't be handling? I couldn't. The result is displayed above in my serenity garden. I made sure to wear a mask and gloves to keep out any lurking fungii in the soil. I wore long sleeves and pants, plus a hat. I roasted. But, it's better to be safe than sorry when you're a transplant patient. I've been on a powerful anti-fungal since being diagnosed with aspergillis of the lungs back in June. Still, one can't be too careful.

I write this from my chair in the serenity garden, bees buzzing around my head. I suppose I should be worried about that hazard but I'm feeling too calm to get in a lather about it.

Good Report

My friend Susan drove me to Dana-Farber today for my monthly check-up. Blood counts are all good: wbc 10.1; hgb 10.4; platelets 128. The driving took longer than the clinic visit. My doctor's very pleased and says I can reduce the prednisone by half. Maybe I'll eat less and sleep more. My friend Ann says the tapering might make me crabby. Bring it on. My bite's always been worse that my bark.

Still pending are the tests they did on my immune system. I'm going to New York City this weekend and want to see if my new system can take the exhaust fumes, the dirt and the crowds. Can I take a subway? That's got to be the supreme test. I suspect I can handle all those hazards, but can my heart handle the excitement? Stay tuned.

Yoga for the Disabled

I went to a yoga class yesterday. I spoke to the instructor beforehand and told her about my right shoulder being weak. On the registration form I filled out prior to taking the class, I mentioned that I had leukemia (in remission). In the space where they ask for what meds you are taking I wrote: too many to mention. Maybe I should just pretend I'm normal. Only I'm not.

There were seven people in the class, all middle aged. I may not have been the oldest, but I was the newest and the worst. Yoga's not about competition but I have a long way to go before I can do downward dog. The weakness is in my right shoulder allows me to do the child pose. Maybe someday my shoulder will get stronger and I'll be able to do a push-up again.

The class seemed to go on forever. I was looking forward to the fifteen minutes of relaxation at the end, but it was only five. In college I took a Kundalini yoga class (for credit!) and we always had a prolonged relaxation period during which people fell asleep and even snored. Maybe Hatha yoga is different. I could have used a nap.

I did feel at once relaxed and energized at the end though. It was hard work but worth it. I'm going to try to do two classes a week and also get some massage therapy. They do have more beginner classes, and one for people over 50 which is probably where I should be.

I only feel a little sore this morning, probably because I've been jogging and exercising regularly. I've been up for over an hour thanks to prednisone and am trying to pass the time until Harry and Marty wake up. Harry has a race today, which we're going to see. It's suppose to be high in the sixties. Marty and I will do errands (library, grocery shopping, bank) and then take Turbo in for a heart worm blood test and urine check. The vet is next door to the ice cream stand, so you know what that means.

I'm thinking grilled lamb chops medium rare washed down with some red wine for dinner. Both would make my doctor shake his head sadly but you only live once and I'm tired of being in a holding pattern. I see him on Tuesday. I want to eliminate or reduce some meds, and I'm sure he'll agree. He's also testing my blood for cd4 and igG levels to check out the strength of my immune system. I could be wrong but my immune system seems fine. I've only had one cold all winter. My doctor will say it's because I'm careful but this isn't altogether true. I've given up mask and gloves, eat whatever I want and have dramatically reduced hand sanitizer usage. I'm eight months out of transplant and feeling fine.

Maybe I should bring my own exercise mat to yoga in the future. Who knows what kind of germs might be on the surface of the community ones, posed to get under my skin and in my lungs while I'm in the child position.

Drinking Coffee Everywhere

Those of you who know me and those who read this blog know how much I love coffee. I've developed a new addiction to the dark temptress--buying and drinking coffee elsewhere (title of a good book by the way). Every time I go out to run an errand, my car veers toward Panera or Starbucks where I'm forced to give up close to $4 for a tall mocha latte. Then I drink it on the run, usually while I'm driving home where I nuke it in a regular mug and add additional whip cream.

There was a time when I pooh-poohed designer coffee shops (heck, there was a time I drank tea) and preferred to brew my own selected brand. Drinking coffee in public isn't the same as drinking it in private. Call me a non-social coffee drinker, a true addict.

I grind my own beans, preferably Costa Rican, and prefer to use a melitta drip, although a french press is also nice and will suffice. To show you how crazy this has become, Marty and I (at my bidding) purchased an expensive coffeemaker on line. It grinds and produces one or two cups of perfect coffee. My friend Patty C. has one so we know it's true. Unfortunately it hasn't arrived and may be back-ordered. We're not the only ones desperate for the perfect fix.

I hope this shallow rant hasn't made you stop reading. There is a leukemia connection to all this. When I was being treated, hospital coffee tasted like burnt swill. Marty used to bring me good coffee from time to time, but never early in the morning. When I was having my transplants, Marty couldn't bring me anything from the outside world, including coffee. My attempts to convince the nazi nutritionist that I could safely brew my own fresh coffee every day were met with a smile and a polite no. Then there was the time when I was not in the hospital but coffee tasted bad to me, truly the bottom circle of hell.

I realize I've been pumping money into the economy by all my retail coffee shopping, but buying an expensive Italian coffee/espresso maker should qualify me for some TARP money. Hopefully, it will keep me off the streets and safely within my home enjoying nature's best liquid. I can live without my martinis, but never my black coffee.

Rejection

I sent out forty or so queries to literary agents in the past ten days, most just proposals but some with chapter samples enclosed. Half have rejected my idea but most have added encouraging words. I guess when you're holding the cancer card, "not for us at this time" morphs into "not for us but your tale is harrowing and inspiring." One agent sent back her card and asked for an outline and chapter samples. This is the one nibble I've received, so you can be sure I'll bite.

Strangely, having my book idea rejected doesn't make me feel bad at all. I join a long list of famous writers who suffered rejection of their work. I'm confident of my writing skills, although I know I need a good editor with a critical eye. My story, although focused on leukemia, examines many aspects of life. Someone will pick it up someday.

What's harder to take is when your child gets rejected. Harry is anxiously awaiting word from the colleges he applied to. So far he has had one acceptance, one rejection and two wait lists. He's still waiting to hear from three more schools, which will notify him on April 1st. Harry has actually taken it very well. His response to the rejection was "meh." As a parent, though, I feel bad. With the wait-list schools, you can send additional accolades you've wracked up since submitting your application. Harry can say that his high school won the Rhode Island State Decathalon Competition last week, the first public school to win since its inception in the state. Harry himself won a gold medal in economics and a bronze in essay writing. It's kind of cheesy to play this "oh yeah, well I did save a whale last week," but if it nudges him up the list it's worth doing.

I'll be sending out more query letters to agents this week, and Harry will hear from three more colleges. We'll be fine.

Doing Things We Couldn't Do Seven Months Ago

Seven months ago my friend Patty C. came to take care of me for a weekend post-transplant while Marty took Mark to college. Marty was comfortable with this arrangement because Patty is a Nurse Practitioner, comfortable with flushing my catheter and deciding when a visit to the the emergency room was in order. I was in bad shape, but fortunately we made no visits to the ER.

Patty and I had planned to take a mini-vacation 18 months ago but it somehow didn't work into our plans. 18 months ago I was cancer-free and able to go away to a spa and have a massage. Then the nemesis returned and spa-ing or anything was out of the question. Don't put off to tomorrow what you can do today?

Recently, since I've been feeling like superwoman, I started researching our spa vacation. Patty had the month of March off and I needed to get out my house and away from my computer. We decided to go to the Newport Marriott which opened a spa last year. We got a great room rate that included discounts at the spa. To top it off, it was restaurant week in Newport: $15 3-course prix fixe lunches and $30 3-course prix-fixe dinners. We had a great meal at the Red Parrot--too much food. Our room at the hotel had those big comfy duvet-covered down comforters, the kind you sink into with a big ahhh.

Patty got up early and went to the gym. I made coffee, watched CNN (hey, my kids will be covered under our health plan until they're 26--taking no skin off anyone's noses), and started a new book by Ann Patchett, one of my favorite writers. It's called Truth and Beauty and it's about a friend of hers who succumbed to cancer after 20 years of battling a horrible disease. Why do I pick these books?

We tried to sneak into a conference breakfast but made the mistake of asking if it was sponsored by the hotel. We went to Panera's across the street and had really good coffee and toasted bagels. Then it was back to the hotel for the treatment we needed and deserved--massages. An hour later, oiled up and looking like asylum patients in our white robes, we transitioned back to this world in a room that had piped in new age music, herbal tea and organic snacks. Patty and I made plans to come again as soon as we could get a good rate.

A little shopping at the Gap, lunch at The Mooring, which included cream of scallop soup, Caesar salad and triple mousse yumminess, our self-indulgence was at an end. We went back to the hotel parking lot, climbed into the pumpkin van and headed back to the mainland.

All told, we spent $476 for the spa and hotel, plus food which was very inexpensive. In addition to the massage, I had an emergency manicure when we first arrived yesterday. It's already starting to chip, the reason I rarely get them. Except on occasions where I am Queen for the Day.

Miscellany

Now that I've been sleeping better and eating a little less (it was getting excessive, really) I've had lots of energy and feel I'm accomplishing more. Every day I have a ritual that includes reading, writing and exercising. Yesterday I ran. Being the weekend, I didn't read more than The New York Times and I wrote nothing. Marty and I were busy with other things.

I've been busy sending query letters to agents. I hope to get a nibble soon because I think the book is mostly written and might even need paring down. The parts I'm writing now I'm using everyday English--no SAT words. The blog entries I think are worth including have a less formal tone, but I play with words a lot and use my vocabulary in ways I don't when I'm speaking or writing lateness excuses for Harry, whom I better go wake up. He has a serious case of senioritis and had been asking to skip first period several times over the past few weeks. He has a pretty good excuse today in that yesterday he spent the entire day competing for his high school in the Academic Decathalon. Not only did East Greenwich High School win, it was the first time a public school won in Rhode Island in the past decade. I note this because the private schools dedicate a class to academic decathalon whereas E.G. meets after school once a week for five months to prepare. Last year, they got second. Harry himself took home the gold in economics and a bronze in essay writing. The gold gets him $500, not bad for a day's work. Also, the team gets to go to the National Competition in Nebraska in April. Enough bragging. Just another moment for me to enjoy.

Having been through what I've been through, I savor these moments. Simple things like chatting with my daughter, having lunch out with my husband become so wonderful, I can't stand it. I'll stop now.

Drugs Work

I think most of us can agree that a pill in time may just give you nine. Here are a few other strategies I used to catch some zzzzzs.

Even though I was tired and almost napped several times, I managed to stay conscious all day. I took the flannel sheets off my bed and replaced them with regular cotton ones so that being too warm would not be an issue. I kept myself moderately busy during the afternoon and evening but not crazily so. I almost blew it by going to a restaurant with the boys and eating a too-rich meal. I figured that would have me up all night dreaming of butter and cream. But I had other tricks up my sleeve, actually nestled in their containers waiting to do their magic.

I managed to watch the entire episode of NCIS, dangerously from the couch. At 9 pm I went up to my room and took a 10 mg ambien and went straight to bed, no reading like I usually do. Within 15 minutes I was gone. When Turbo started snoring I took no chances. I took a 1 mg ativan to put me under again and went off to sleep in Mariel's room. I didn't wake up until the alarm went off at 6:15. That's nine hours of sleep.

With two cups of coffee under my belt I feel ready to go. There will be no excuse for not jogging today. The weather will be fine and I won't be tired.