Therapy or Can of Worms?

Was it last month that I threatened to write a book? I began by trying to organize and categorize essays I've already written. This did not go well, since I quickly realized I had material for many books, not just one. Perhaps when I am old and grey and nodding by the fire I will dictate my memoir, Strange Journeys, to my grandchildren. This will include the different phases of my life that seem so disparate but may someday reveal a linear dimension. For now, I will write about leukemia. God, I hate that word.

Now that I've been a guinea pig for nearly four years, I thought it time to record my journey through Cancerland so that others--current and future patients, caregivers, family and friends--can get an idea of the day-to-day challenges of the disease and its treatment. Not that all paths will follow mine, but thematically there will be much overlap. I'm hoping this will be a helpful guide to others walking in these crappy shoes.

Yesterday, I finally started writing the first chapters. Some of it I had already been written so I spent a lot of time weaving the new and the old together. I find this much more difficult than writing from scratch but since memory is fickle, it's beneficial to have journals and notes and writing exercises and blog posts to refer to and borrow from.

Writing about my illness is cathartic in many ways. This is what happened. This is how I coped. This is how I fought back. All very courageous and uplifting. The downside is having to relive the darker memories and try to make sense of them. Anxiety sneaks up from behind and screams: Boo! There are drugs for that.

I will be in need of a good editor, not to mention a publisher, but for now I'm going to fasten my seat belt, let the words flow and see where they take me.

Ups and Downs

The problem with being a transplant patient is you're never sure if a sniffle is the first sign of pneumonia, or whether stomach pain is graft-versus-host disease or just something you ate. I spent much of the week feeling blah, and not sure how much I should worry about it.

Any symptom is a sign and it's always bad. You blow your nose and are startled by a bit of blood on the tissue. Oh no, my platelets are low, so low I might be relapsing. If you were a rational person you'd chalk it up to the season's low humidity. You forget what it's like to be a normal healthy person who gets colds, aches, pains and other minor conditions that don't portent life-threatening diseases.

I spent all Thursday night moaning and groaning, getting up in the icy cold, chugging Mylanta. At one point I even vomited. That hasn't happened in a long time and was all very reminiscent of how I was feeling in the fall. At that time, my doctor said it might be gut gvh and we should keep an eye on it. The symptoms disappeared one day, and that was the last mention of gvh. When they came back the other night, I was miserable. By the way, a little gvh is good for you because it means your donor is actively hunting alien cells such as residual leukemia. Some of your good cells also suffer but there are drugs for that. A lot of gvh is bad, even deadly. The trick is to recognize it and treat it in time. It's a delicate balancing act.

Twenty four hours after my guts started churning, I began to feel better. I guess I had a run-of-the-mill virus after all. Today I feel fine, except for being a little tired. I'll take it.

Weekly Reader

I'm taking a page from my friend Ann's blog by recapping the past week's events. There weren't any, which is how we like it around here.

After receiving a transfusion last week, most of my annoying but unimportant symptoms slowly disappeared. Night hunger continues to plague me but I just send Marty down to get me a light snack. I walked 2 miles in the blustery cold the other day, cursing myself as I plodded on. But I was so glad I'd done it after the ordeal was over. I'm getting stronger every day. Being cold all the time, indoors and out, is no fun, but I wear huge sweaters and always sit in front of a heater. I haven't been outside since Wednesday and don't plan on going out until the temperature rises above 30. Unless, of course, it snows, in which case I'll at least take a trip to the mailbox.

Marty is picking up Mark today in NYC and they're driving down to the Phillie area for my niece's baby-naming ceremony. That means I will be free to commit numerous transgressions while he's away. In theory, Mariel (who arrived home yesterday) and Harry are my caretakers, but if I can't outsmart a high school and college senior, I've completely lost my touch.

Am I rambling?

I fill my time with knitting many scarves (four down, two in the works), reading an inscrutable novel (2666) and watching Wolf Blitzer in the Situation Room. Yesterday, I sat down and wrestled with the CSS Profile which I have to fill out for Harry. It's a financial aid form that I've filled out many times in the past, but usually sometime in February when I have more tax data. 2009 was a pretty pathetic year for us in more ways than one. Having to record the misery in cold hard numbers almost made me weep. Still, we are luckier than many of our fellow Americans who are losing their homes and health insurance.

Today's agenda includes seeing Marty off, knitting, reading, eating and watching a little tube. Doesn't sound half bad, does it?

Type A

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

On Wednesday, we drove up to Boston in a snowstorm. It took us three hours to get there, double what it usually takes. We didn't see my doctor until 1pm, and when he told me I needed red blood cells, I figured we'd be at the clinic until 7. He gave me the option of having a transfusion in Rhode Island, which seemed more reasonable. We didn't get back to our house until 4 as it was. Now I know what shortness of breath feels like.

Bright and early on Thursday, we headed up to Memorial Hospital where my local oncologist is head of the Cancer Center. They crossed and typed my blood, and Marty and I went out for breakfast since it takes a couple of hours to get the blood ready. We went to a nearby diner, which was quite a Rhode Island experience. It deserves its own post, so you'll have to wait for the story.

Back at the hospital's infusion lab, I was told my blood type had switched over from O to A. My blood arrived, and I spent the next 5 hours knitting, dozing, reading, watching my soaps and chatting with Marty. Tanked up, we left around 4, another long day devoted to transplant fallout.

I'm happy to report that the vampire in me is fully sated. I'm re-energized, breathing normally, and can now cultivate my A personality to its fullest and sickest.

Infidel, a Review

Throughout my nearly 4-year leukemia journey, I've always rejected the question: why me? Why not me? I had lived a privileged life until leukemia derailed me. Fear, pain, guilt have wracked those 4 years, but there were some extraordinarily happy times sprinkled throughout the ordeal.

I just finished a memoir written by a Somalian woman, Ayaan Hirsi Ali. What this gutsy woman experienced her entire life makes my misery ridiculously short-term. Hirsi Ali is the kind of person I was thinking about when I rejected the "why me?" question.

The major themes of the book are Islam, women's rights and politics in Africa, Holland and the United States. Hirsi Ali, now employed by the conservative think tank American Enterprise Institute (Washington, DC), tells the jaw-dropping story of her Somalian, Ethiopian and Kenyan childhood, her escape to Germany (to avoid an arranged marriage to a Canadian Muslim) and eventually, asylum in Holland. Her time in Holland radicalizes her. Everything works; everyone, including refugees, are accorded basic human rights and then some; violence is uncommon. Most puzzling is that Hell is nowhere to be found. She begins to see Islam through Dutch eyes, becoming a citizen and then being elected to serve in Parliament. Violence re-enters her life when a colleague with whom (Theo van Gogh) she makes a short film is murdered by an Islamic extremist. A fatwa is issued against her, and she spends months in hiding, heavily guarded. The memoir ends with her moving to the United States and writing Infidel. She returned to Holland in 2007. Death threats are still tossed her way.

Hirsi Ali and I were both dealt fates we wouldn't wish upon anyone. Our battles are ongoing, but she carries a lifetime of scars, abject fear, and confusion on her shoulders. She defines bravery. As a 4-year leukemia survivor, I just try to put up a good front.

I Lived for This

Except for the fact that the turkey was the worst I've ever cooked, Thanksgiving Day was the best in memory. I did most of the cooking, so I was exhausted by the time we got to dessert (plus, my ankles were swollen), but thankfulness doesn't begin to describe what I was feeling.

For the first time since August, Marty and I and our three kids were all home. I'd been to hell and back in the interim, so there was a very special synergy to the reunion. I lived for this and times like them. I am a happy woman.

The day started with listening to the obligatory "Alice's Restaurant" on the radio. Marty and I had breakfast alone, and tuned into the Macys Thanksgiving Day Parade, one of the cheesiest spectacles I can't do without. It's tradition. During this time, I was working on dinner preparations.

The five of us had hors d'oeurves by the fire around 3:00 pm, and then it was a mad scramble to put the finishing touches on dinner. The kids played a board game while the parents slaved.

Despite the centerpiece of the meal being a dud, it was a wonderful repast. George Winston's "Winter" played on the stereo, and we sat around talking and telling stories long after we'd finished eating. An hour or so later, we regrouped for Mom's apple pie and more conversation. I was starting to tip over by that point, not that anyone noticed.

Someone got the idea that we should do a family weigh-in. We totaled our weight, which was somewhere near 753 lbs. Then the kids computed our combined BMI (body mass index), and even though we had each mysteriously gained three pounds apiece, we were within the normal range. Then the kids decided to have a push-up contest, Mark pitted against Mariel and Harry, who alternated turns. Marty and I kept track of the counts. Mark reached 50 first, with Mariel and Harry combining for a respectable 45.

At that point I was caving in, a blissful idiot. Today I plan to do nothing but enjoy the family circle. It doesn't get better than this.

Murder and Mayhem

This is way off the leukemia topic, which I'm taking as a good sign.

When I was younger, I loved movies. I took a film class in college and got hooked on watching films not so much for entertainment but for the rich details the director offered up. Of course, I was an Ingmar Bergman fan.

Then I stopped going to the movies. Some of this had to do with the change in direction my life took when I started a family. Going into Manhattan for a movie and a night of clubbing became a quaint memory. Walt Disney films became a staple, and then I just stopped going. Sure, I saw a few films in the theater, a few on TV, but I lost my taste for the medium and didn't miss it at all. Even Woody Allen became stale. I haven't watched a film on the big screen since The Hours.

Part of my reluctance to see anything rated R is the level of graphic violence that completely ruins the experience for me. Blood and gore is not my sport. Chick flicks leave me cold. Special effects don't wow me. I prefer quirky: A Fish Called Wanda, Raising Arizona, The Motorcycle Diaries. You get the picture.

Marty has talked me into watching Netflix films with him of late, some old, some new. I enjoyed Witness for the Prosecution, and we watched The Thin Man for the umpteenth time. Then we received The Taking of Pelham 123, which I thought was the old version but it turned out to be the recent remake. The remake featured good actors and the obligatory special effects. Modern technology played a big part in the movie, and the characters displayed complicated psychological motivations. We watched the movie over a pizza and it was a fun way to spend a Friday evening.

But the original version, which we watched last night, was the better movie. Made 35 years ago, it captures New York and New Yorkers brilliantly. Parts of it were hilarious. The other thing that bothers me about contemporary films is the unnerving number of plot twists. I don't mind complex and complicated, but I don't like being jerked around either. So, other than the annoying James Bondian music, the original wins my vote hands down. Apologies to John Travolta and Denzel Washington.

The First 100 Days

Today I am 100 days out from transplant. It's a milestone, even if a somewhat arbitrary one. If you make it to roughly Day 100, survival rates are more favorable. Your body is somewhat stronger, and should you develop gvhd (graft vs. host disease), you will be in better shape (perhaps) to ward off some of its more devastating effects.

The next step will be to start weaning myself from the immune suppressants I take to prevent or minimize full-blown war within my body. Actually, a little gvhd is seen as a good thing as it indicates that the donor cells are at least skirmishing with the rest of me, including any residual leukemia.

When I had my first transplant, I knitted myself a sweater with decidedly mixed results. It looks like a pretty nice sweater, but it has an odd fit I didn't see coming. Last week, I decided to take up some knitting projects that wouldn't be as challenging as a sweater, but would still be fun and useful. I'll be knitting a lot of scarves in the weeks to come. I'll be mixing up the patterns and colors so it should be amusing. It's also good physical therapy for my continued weakness in my right arm and hand that developed when they stretched my rotator cuff while implanting my catheter. Maybe I'll graduate to hats and mittens/gloves when the scarving becomes tedious.


mb: Thanks for your well wishes on my previous post.

Once a Week to Once a Month

My clinic visit was uneventful yesterday. My blood counts are good, although still slow on the reds. But I'm producing them, which is what counts. My doctor said there was no need to see me for a month. Whoopee!

Now I seriously have to find things to do with all my time. I went on a covert mission to a virtually empty Target the other day (masked and gloved) to buy some new drinking glasses. I don't plan to casually pop into stores as the flu and holiday shopping season cooks up.

Marty and I have started jog-walking, which is how I plan to get my strength back. Now that my brain functions well enough to follow more than short snippets of reading material, I relish the thought of curling up with a hot drink and a book as often as possible. I also hope to knit scarves for family members, which will require another masked outing, maybe tomorrow. Domestic bliss or what?

But the activity I should be working on is writing a book. I have plenty of material already written. Now I just have to find the discipline to pull something together that others may want to read. Is it possible to piece together the variety of writing I've done and have it cohere? Much is in essay format, but I have short stories, poems, letters, and blog posts I'd like to somehow weave together. I don't want to write a memoir per se, but I do want to include our Costa Rican sojourn and the leukemia war. The Complete Works of PJ?

A project like that would keep me busy enough while I'm laying low. In the meantime, I have to hope my internal battle against evil leukemic clones is proceeding according to plan. Being engaged in a project will take my mind off those nasty cells and keep me from getting cranky.

How to Shape a Day

Now that I have some blood flow and am no longer stupified on ativan and NCIS reruns, I find find myself with vast quantities of time begging to be filled. Many of the things I'd like to do are forbidden to me. I actually like to rake leaves, for instance.

Here's how I busied myself today. I was the first up so I made the coffee, something I haven't done in over 3 months. I have not lost my touch. I poured myself a cup and sat down with my laptop, thinking about fried eggs. After breakfast, I switched my spring/summer clothes for fall/winter, which is a good work-out. I barely wore any of the spring/summer items since the leukemia returned in April, wearing mostly hospital gowns or loungewear since then. That's what I get for not dilly-dallying with the switchover in Spring. I could have saved myself today's task, but really, I was happy to have something to do.

As soon as Marty went out to do a little fall clean-up, I donned mask and gloves and removed 2 screens from my kitchen window (from the inside) and proceeded to vacuum them as well as wash the insides of the windows. These screens can stay in all year, but they cut down on light and visibility and who needs that in the months ahead?

I read a little Headlong by Michael Frayn and wrote some emails and this post. It's so much easier to think straight when you're not feeling green. Oh, and I skipped my afternoon nap for the second day in a row. Lest you think I'm getting too cocky, I do feel tired. But that's what tea and crumpets are for, and that's going to be the very next thing I'll make.

It's All About the Egg

My doctor walked into the examination room all smiles. I'm making red blood cells, and even more than doubled my platelets since last week. He wanted to know if I had started running yet.

I pulled out the list of dietary prohibitions I've been following since August to see if we could move the traditional 100-day lifting of restrictions to Day 88. I can now eat fresh and uncooked fruits and vegetables; I can eat take-out food; I no longer have to boil my tap water.

What about my catheter, can I get that yanked? My doc arranged to have it done before we left Boston. I do not miss that tube hanging from my chest. Having a catheter or external port is convenient if you are receiving chemo, certain medications and blood products, but I have never been able to get beyond the Frankensteinian creep factor.

We arrived home after 7 pm, pizza in tow (yes! from a pizzeria) and settled in to watch the World Series. Even napless, I managed to stay up until the end.

When I woke up this morning, I could think of one thing: a fried egg over easy with the yoke running. Oh, how I've craved this in the past few months. My doctor said it was fine, although he couldn't understand how an egg is cooked is important in any way.

It was perfectly cooked, a river of yellow (which briefly reminded me of a nasty liquid med I take twice a day) oozing onto the plate and begging to be sopped up with a toasted poppy bagel.

Hmmm.

Monday Afternoon

Here it is Monday late afternoon, and I'm in the kitchen with Marty, who's making lasagna. We're listening to Ruben Blades sing a little salsa. What's missing is, I'm not nauseated, haven't been in one whole week, and in fact have no idea where the emesis bucket is. Until a week ago, that pink basin never left my side.

With the sudden exit of nausea and it's violent concomitant effects, I feel like a new person. When you're in the throes of illness, it's very difficult to imagine the day will come when you don't want to throw yourself under a train. Everyone else naturally gives copious amounts of encouragement, which only makes you feel more ill, more isolated, even angry.

Less time being sick means I have more time to do things I like to do, more energy to spend doing things I haven't had the desire to do in the past few months. I'm almost living. I can now sit down to dinner with my family and do more than push the food around my plate like a 2-year old. I can stay up and watch ballgames (though not to the very end), and witnessed Andy Pettitte hit an RBI-single and eventually score. I went to a cross-country meet on Saturday, and actually broke into a trot so as not to miss a viewing point. I'm enjoying my son Mark's Fall break, the first time I've seen him since August 30. He has traveled many miles (most via subway), but I think it's fair to say I've covered a lot more ground.

To all you recent transplantees (and their caregivers): hang in there. It generally does get better. You have to believe that wretchness isn't your new permanent state. This is a mental feat that's highly challenging when you're sick and weak. No one will blame you if you rail and wail and growl now and then. I certainly won't.

Could It Be Magic?

We made the hejira to Boston yesterday. While I snooze comfortably, poor Marty has to make the weekly drive. Sometimes he gets me back though by playing show tunes, which in general, I can't stand. Guys and Dolls can be a rude awakening.

Not only was I feeling pretty good yesterday, my blood counts were cause for celebration, although they didn't appear to be. WBC =3.2; RBC =3.14; Plat=46; ANC = 2.53. This is about where my counts have been hovering the nearly 3 months post-transplant. I've been producing no new RBC's at all, relying on transfusions to keep me afloat.

I was surprised then when my doctor said maybe my transfusion days were over. My reaction: are you a magician? No, I have 30 years of experience. We had a good laugh over it. Turns out a measure of reticulocytes (who knows from those?) indicates when production is finally ready to begin. I'm there.

Magic?

Expertise?

I walked out of there not really caring. Although I still find plenty of this transplant business bordering on the paranormal, I'll take good results by any means necessary.

The View From Where I Sit

I'm not going to talk about anything medical today, mainly because it bores me so. Rather, I'm going to paint a picture of my backyard. The rain has stopped for now, but the wind is still huffing and puffing, pelting our house with acorns and other debris. The backyard has a lot of fir trees so lacks the brilliant color of the front. But the viewing area in back is far superior to the front rooms. Leather wrap-around sofa facing a bank of French doors: the perfect spot to view wildlife and weather events. The bird action is mesmerizing, and quite compatible with my current interests and abilities.

And if by chance I'm hungry or thirsty, the refrigerator is 20 feet away.

Status Quo

Your eyes do not deceive you. I am actually writing a post on my blog. It's funny that with all the time in the world on my hands, I can't manage to crank out an update or two.

There's nothing new to report on the transplant front other that I am 100% donor. This is as it should be. Mr. Donor must have other pressing things to do, because he's not making red cells, which I sorta need. Right now I'm getting transfusions every three weeks.

My biggest complaint remains nausea/vomiting/weight loss/lack of motivation. If I feel bilious, I have to pop an ativan and wait 30 minutes for it to kick in. It usually works, but inertia sets in and I find myself washed up on the couch watching countless episodes of NCIS.

So no news really. I want to thank all of you who've been checking up on me. I appreciate the phone calls, emails and blog comments. And thanks George. Maybe I can hire you.

Mythic Proportions

My eyelash is driving me crazy. My one eyelash. Yes, I only have one, which every day falls out into my eye causing me blurry discomfort. Overnight, the eyelash grows back, only to fall into my eye once more.

Remember Prometheus? The god who was punished for giving fire to humans by having his liver torn out each day, only to have it grow back to be torn out the next? That was my first thought. But let's face it, I'm no Titan.

My second thought was more down to earth. Remember Wooly Willy? Mr. Willy was hairless. You used a magnetic wand to give him hair, a beard, a mustache, whatever you wanted. With no hair on my head, one eyelash, and formerly bushy eyebrows growing more sparse each day, I could use some of that black magic.

In the meantime, I accept my fate.

The First Forty Five

It's been forty five days since my transplant. That's not a magic number or anything, just a point of reference for where I was and where I am.

Physically speaking, I'm a different person than the one who (barely) walked out of the hospital. Those first days home had me wondering why on earth our toilets were so low to the ground. It took me a while to realize that in the hospital, there are safety bars all over the place, and you become used to using them. I am happy to report that as my legs have become stronger, toilet height is no longer a focal point.

Nausea remains an ongoing problem. Six days out of seven I wake up in the morning feeling queasy, an unpleasant way to start the day. First I take the under-the-tongue nausea medicine, then munch on some Ritz crackers, keeping the emesis basin close by. I can always pop an ativan, which is the only drug that really seems to work for me for nausea. Unfortunately, its anti-anxiety properties induce a mild state of catatonia which leaves me no choice but to take a nap.

I don't want this to be a litany of my symptoms. On the wellness side of the scale, I feel stronger and I'm trying to do the occasional household task, even though I'd rather not. I've probably used up my daily quota of cognitive energy writing this post. So be it. You, my dear readers are worth it.

Remarkable State of Being

There was a moment this morning in which I realized I felt normal. I'd had a good night's sleep, no early morning nausea, and a successful breakfast followed by the usual mound of pills.

It didn't hit me right away, though. I didn't recognize what wellness feels like. It feels good. To take advantage of this remarkable state of being, I did a few things around the house, went for a walk with Marty and Turbo, and wrote some emails. I even did some on-line banking.

Maybe I overdid it a bit because now the post-transplant haze is thickening and I'm looking forward to a post-prandial nap. Tomorrow I go to Boston for my weekly clinic visit. I'm hoping my counts are stabilizing and that I won't need any "products."

In the meantime, I'll be monitoring myself for signs of wellness.

Changing Blood Types

Yesterday we spent 7 hours at the clinic. My red blood cells are a little pokey, so I needed 2 units of blood. This is apparently normal when your donor is a different blood type than you are. I'm 0+ and he's A+, and the difference makes for extra drama on the counts front. Eventually, I will convert to A+, but in the meantime I must patiently wait for Mr. Donor to start churning out more A's.

I'm getting stronger every day, but that's not enough for me. I want to be well NOW. Especially annoying is that I seem to have misplaced my joie de vivre. Everything seems like a chore, and I find myself staring at the boob tube because it requires no thinking, decision making, or even much cognitive functioning.

Today I hope to make it to my son's cross country race. The risk will be minimal because we'll be outdoors and I can easily avoid crowds. Who knows? Maybe I'll find a piece of my joie de vivre watching a hundred runners thunder across a grassy field.

Plogging Along

Slowly slowly slowly I improve. What keeps me from posting more often is a slight weakness in my right hand, related to my rotator cuff issue. The days pass quickly and involve swallowing copious amounts of pills and hoping they don't hurtle back up. Nausea haunts me.

Eating is a job, not a pleasure. I don't have much of an appetite but eat I must. I nap a lot.

I'm getting a little more exercise each day. I shuffle up and down the street, looking and feeling like an octogenerian, and not a very spry one at that.

I went to the clinic yesterday and it seems all is well. My blood counts are holding steady, and the doctors are pleased with my progress.

Sickness comes on horseback but departs on foot.
~Dutch Proverb, sometimes attributed to William C. Hazlitt

Take the Ca$h Cab

It's midnight and your nurse comes in for something or other, after which you get up to use the bathroom. Suddenly, you feel very odd, and your nurse sees it on your face. Your heart is beating a mile a minute. We are not figuratively speaking here.

Your nurse calls in another nurse whom she tells to page the doctor on call. The EKG machine is wheeled in and you are quickly hooked up to it. Your heart rate is not just irregular but high, very high. A doctor comes in and does a quick assessment, assuring you that it's probably not a heart attack. Still, you hear a nurse ask if she should get the crash cart. You are suitably terrified.

The doctor explains that she is going to inject you with a drug that will make you briefly feel like you've downed 100 cups of coffee. You can't imagine what that feels like. How bad could it be?

Bad, very bad.

You feel as hot as those 100 cups of coffee, but you also feel like you're about to explode. Is this it? Is this where it all ends?

No, your heart rate eventually returns to a nearly normal and rhythmic range.

Readers, that was me Monday night. After much testing, they're calling it a random event, but I will be taking medication for arrhythmia for a time. Now that your blood pressure is up, let me tell you a funny story.

I was telling my husband about the saga the next day, trying to give as many details as possible so he might have an idea of how I'd felt physically as well as mentally. But instead of saying I heard a nurse call for the crash cart, I said cash cab. We became hysterical, and could not stop laughing.

And to calm any fears you may have about my health, let me also tell you this:

I'm going home today!

White Cells to the Rescue

What every leukemia patient yearns for:
Healthy white blood cells. Thanks Emma!

This week has been a challenging one, downright cyclonic in its gyres and gimbles. As I staggered from one late-night MRI to the next, a CT-scan thrown in for good measure, all I asked for was a bit of unconsciousness.

Only one of the MRI's explained my shoulder pain, a slightly torn rotator cuff, which is likely to heal alone, with some physical therapy. The CT- SCAN showed that I had a small amount of fluid in my lungs, the pain compounded by all the violent vomiting I'd done. The doctors seem unworried but are covering me with a broad-spectrum anti-biotic just to be safe.

If you're wondering what on earth is that white blob I'm nuzzling, Why, it's a white blood cell, approximately ten million times its actual size. When I get enough white cells to effectively battle infection, they start talking about discharge.

Soon my friends, soon.

More Transplant Fun

I've developed the requisite mouth sores (few transplant patients escape them), which means that only certain foods go down well. I have a mild case of it, so I have to limit myself to soft foods that aren't too hot. Oatmeal, which I fortunately like, but maybe not for long, fits the bill perfectly. Pudding is also a winner, as is cooled chicken noodle soup. Tomorrow, I plan to try a hard-boiled egg. Since I'm receiving supplemental feeding through one of the three lines that dangle from my chest, it doesn't much matter what I eat as long as I keep the system flowing. Otherwise, I would have to re-train my digestive track, much like a baby has to start off slowly adding new foods.

Today I needed two units of blood. This takes about five hours, so I was fortunate that Mariel was here to help me pass the time.

I still have arm/shoulder pain but it seems to be improving. A neurologist came and hammered, raked, and generally tortured me.

Also, I've developed a nasty, itchy rash that has everyone puzzled. The attending physician suggested that it could be gvhd (graft vs. host disease) in a very early stage. Gvhd occurs when the donor cells, seeing the recipient cells as foreign, launches an attack. The doctor was hesitant, however, to prescibe a steroidal cream, so for now, I apply lotion and try not to scratch. Easier said than done.

Transplant veterans know that what I'm experiencing is typical and not overly serious. So put those worry beads away and send me any soothing energy you happen to have lying around.

The Pressure, Oh the Pressure

Everyday my husband asks me if I've blogged today. Well, I did get my socks on by noon.

Don't get me wrong, there's plenty to blog about, but it takes energy, which I seem to have misplaced under the covers. And I love all your comments--heck, we've even managed to flush out some far-flung and feared-lost Canadians we haven't heard from in a long time.

My biggest problem is that my right hand (actually the whole arm from shoulder to fingertip) has been weakened, let's hope temporarily, most likely due to the radiation. I may have to ask Marty to be my scribe, except we tend to fight tooth and nail on grammar issues. Seriously, he is a good editor and catches and fixes my most glaring errors.

Except for the usual and expected issues (nausea, fatigue, bone pain), I'm doing okay. A friend sent a stuffed white blood cell I have suspended from the ceiling, constantly nagging at me to crank up production in that department.

And she sent a book about writing the six-word memoir. We could all use more of those.

Here's mine: Have as few transplants as possible.

Darkest Before the Dawn

This will be brief. I have had a rough few days of it--serious chinks have developed in my armor. The cytoxoxin caught up with me on Monday. On Tuesday, I started total body radiation or TBI. It feels like nothing while you're having it, but a few hours later you go comatose and just generally wish you didn't exist. This is a difficult mood to be in when you are surrounded by loved ones, some you're not even aware they're there.

My main problem is nausea. The little I eat returns to haunt me. Once they give me the anti-nausea meds, I sink into a dull stupor, or lose consciousness totally. This is probably a blessing.

A psychiatrist came in to see me the other day. She managed to compress the highlights of my life into about 20 minutes. It remains to be seen where we're going with that, but it appears I've lost some mental acuity with the radiation. I couldn't give the correct date. I failed to draw the hands on a clock correctly, and I drew 4 squiggles instead of 3. I still know my name and birthdate.

I have 3 more rounds of radiation, 2 today and 1 tomorrow. Friday, I get my donor cells.

My job is hard, but Marty's is harder. He has to sit here and watch me suffer. Fortunately, the staff here has been great.

Onward

Small Slice of Sky

I checked into my room yesterday at 4 pm. It's smaller than a breadbox, but has some compensating features such as remote-controlled blinds and drapes. Last time I was here, I had a double-size room with a view of houses on a hillside. This room has a view of tall buildings topped with a dash of sky.

Today has been going well so far. My main activities have been pill-swallowing, pod-walking and reading. They're saving the really exciting event for later in the day when they will pump me full of saline and give me my first dose of cytoxin. Marty plans to be here for that. I plan to be on an ativan cloud floating over the rooftops.

Long Sobering Day

My husband and I arrived for our appointment with the radiation specialist at 10 am. I will be receiving 14 greys (units) of radiation over 4 days. All areas of my body will be zapped except for my lungs, for which they made a shield. The laundry list of possible side effects, short and long-term, overwhelmed my husband and me. Basically, any and every organ can be affected, although they assured me that patients with solid tumors receive many times more radiation and do just fine. I held back the tears until we were alone. I don't like to display emotion in front of doctors.

Next, it was onto the lab where they drained me of 30 vials of blood. This was an all-time high for me, and made me a tad woozy. Time for lunch! We met with Michelle, a friend of our daughter's from our Costa Rica days who's now at Tufts. Eating helped restore some bodily fluids and gave me an energy boost. Just in time to meet with my transplant nurse, who gave us an outline of what to expect once I'm admitted to the hospital. The highlights are as follows:

Enter Brigham and Women's July 31 for catheter placement and room assignment, which will be in the intensive-care transplant pod. Can't wait.

Two days of Cytoxin which can be, you guessed it, toxic to a number of organs, specifically the bladder. To ward this off, I get pumped with fluids and spend 2 days tethered to the toilet.

TBI the next 4 days. Watch me glow.

While I stoically undergo this draconian process, a 44-year old man in Europe, possibly German, will be receiving stem cell stimulating injections for 5 days, and then spend hours tethered to an apherisis machine which will collect the stem cells that will potentially save my life. This is what I plan to focus on during my preparation. My nurse misted up; I was strangely calm, thinking about the altruism of this stranger.

We had to wait an hour to see my transplant doctor, not easy. I tried to read, with no luck, my anxiety scraping the ceiling tiles.

Finally, we saw the doctor, who gave us the skinny on all the risks (quite serious), the statistical realities, the rough course I was about to endure. My emotions had apparently been drained along with all my blood, because I calmly signed the consent forms, talked my way out of a bone marrow biopsy, and referred to the many notes I had taken two years prior, quoting the doctor and generally commandeering the session. At which point my doctor referred to me as as a cockroach who just keeps surviving whatever evil clones and toxins are thrown my way. These three years have certainly been Kafkaesque.

One more meeting, with the social worker; more tears but not mine. Lest you think I'm a zombie or worse, merely devoid of feeling, or worst, suppressing my emotions and in danger of serious psychic injury, let me reassure you I am none of the above. At dinner with old friends visiting from New York, I broke down when dinner wasn't served in a timely fashion, blubbering like a baby in the restaurant.

Today was much better. I had a good night's sleep, ran with my friend Dianne (she biked), relaxed, chatted, accomplished a few things, ate well, and kept my thoughts off the month ahead. I plan on getting a good night's sleep, and spending tomorrow at home doing not too much, except the necessary packing and final arrangements. We'll go out for a family dinner, and I'll eat all the things I won't be able to have for the next month/3months/year.

Then I harden my shell, go without food for days on end, metamorphasize into a young(er) male-blooded European and with luck, love and medical know-how, survive a long long time.

Our Dog Asta

Asta 1997-2009

The death of a beloved pet has a way of shaking us from our day-to-day obsessions to remind us that although nothing gold can stay, the memories live on. At first they stab us with sharp fresh wounds. Then we laugh a little and tell stories about the puppy who became the top dog. Then we move on to loving the surviving pets with more ferocity, at least for a time.

My husband sneaked Asta into our home in Costa Rica one summer while I was in the US with the kids. Our old bouvier Spree had recently died and Turbo, our one-year old bouvier, and Spree's annoying companion, was lonely. So, Marty adopted 7-month old Asta from a German woman who was bouvier-rich. Asta's name was Lucy, but not for long. When I returned, I saw a dark form on the wood stairs who didn't seem to be Turbo. It wasn't.

The name Lucy had to go. She became Asta, after the dog who helped the martini-drinking Nick and Nora solve crimes in their posh world. Asta soon established herself as the alpha-dog and as Marty's pet more than mine or the kids. Turbo accepted his fate like a gentleman. Turbo and Asta were half siblings on the father's side. Different colors and opposite in personalities, they made a handsome pair and had a great life munching mangoes, defending our property and chasing wildlife. Asta was resonsible for our pet parrot Juanito dying of heart failure, but this is a story you'll have to read in my Costa Rica Chronicles.

Asta was a well-traveled dog, spoke at least two languages and held dual citizenship. At age 4 she settled permanently in the US with the rest of us. One of Asta's special talents was that she loved to jump. Our daughter Mariel set up obstacles all over our back yard and put Asta through her paces. Soon Asta was flying over the back fence, with brother Turbo following suit. We were forced to install an invisible fence.

Asta was not a friendly dog. She barked at everyone who entered our house and then found a corner from which she could keep a wary eye on the intruder. She didn't like to be petted, even by Marty. Only Turbo was allowed true intimacy with Asta in the form of ear licking and other doggie acts.

At age 9, Asta was diagnosed with a slow-growing tumor entwined around her heart. The vet gave her a short time to live, saying she'd probably drop dead of a heart attack within the year. When Asta walked in for her 10-year check-up, the vet commented, "I never thought I'd see that dog alive again."

Asta's hip dyplasia definitely slowed her down in the past year. She didn't want to walk very far, and jumping was out. But she remained the fierce defender of our home and loyal friend to Marty. On Wednesday, the day after our return from Block Island, Asta refused to get up from Marty's side of the bed. Her breathing seemed a little labored; food wouldn't coax her. Marty and Harry put her in my van and took her to the veterinary hospital where she was quickly diagnosed with bleeding in the stomach, caused by tumors in her liver and spleen. Marty called to tell me there was nothing to be done, and that he would be with her when they put her to sleep.

Marty and the boys dug a hole in the backyard under the oak trees, laid Asta in it and buried her. Yesterday, we bought some foxglove (purple was her color), some river pebbles and made a fitting memorial to the dog that we'd loved and cared for for eleven years.

Turbo is now top dog, but not sure he's up to the task. He's getting lots of love and attention but he still sleeps on my side of the bed, and doesn't know what to make of the new state of things. Turbo was always a little slow, but I know he has a hole in his heart, as do we all, for Asta, a fine example of a bouvier, a great dog, a greatly missed member of our family.

Running For My Life*

I was determined to get back to running before my transplant. By now you all realize I'm driven, kooky, and like to show off for my doctors and children. Not so much for my readership, except to demonstrate that shaping up is a good way to approach chemo treatments and transplants. Or anything stressful.

Last Sunday, I put on my running shoes, and with my son Harry on a bike, with cell phone, we wobbled out of the driveway. After warming up for maybe 200 meters, Harry guided me through some stretches. I slowly jogged the next kilometer and stopped to check my heart rate, around 122. Then I jogged most of the way back to my house, taking a couple of breathers along the way. More stretching. I figure I ran a mile in total. It took a while for my heart rate to go down to my resting rate of around 68-72 (for which I was soundly mocked by my son Mark). I showered, reveled in the endorphin rush, and immediately started foraging for food.

On Wednesday, I got up and ran alone, 1.2 miles (2k) without stopping. I duly reported this to my oncologist at my appointment later that morning. My goal is to do 2 miles before I enter the hospital next week for pre-transplant conditioning.

*Ronni, I hope you don't mind that I borrowed your blog title. There was no better way to express this.

24 hours on Blissful Block Island Equals a Week Anywhere Else

Spur of the moment, my husband and I sailed on the ferry to Block Island, a small pork-chop shaped oasis located between Rhode Island and Long Island. We stayed at a quaint old country inn called the 1661, the year BI was discovered. Block Island holds special meaning for our family because we've been vacationing there since 1986. Our kids know it well, and since we currently live in Rhode Island, we've visited the Block numerous times recently.

On the theory that a picture is worth a thousand words (which I don't incidentally always hold to be true), I post a passel of them here for your perusal.

On the Ferry

Wine and Cheese in the 1661 Inn garden over-looking the Atlantic

Amidst the hydrangeas

My husband and I on the inn's front porch

Always a nose in a book, currently The Reserve by Russell Banks

Stopping Time

On Friday afternoon, I finally speak with someone at Dana-Farber who had indicated in a phone message the day before that she had new information about my upcoming transplant. Readers, I admit I had been hanging onto that cliff with all my will.

I am to be admitted Friday, July 31 to have a catheter surgically implanted in my chest and to begin preparation for my second transplant, which better be the coup de gras. How much can a woman take?

After the brief phone call, a wave of elation washed over me and I rushed out to tell my husband the news. We hugged and he became misty-eyed, then went back to working on his bike. Suddenly, the enormity of it struck me. An anonymous donor was willing to save my life. I wept buckets. And then I called the Financial Coordinator at Dana-Farber to make sure my health insurance ducks were all in a row.

I have two weeks to live large, and I plan to render each day down to its essence. Time will neither fly nor creep because I'm going to pay attention to the here and now. I've stopped wearing a watch.

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

Miracle on Beaver Lake

Remember all my kvetching about the inability to taste salt, the issues I was was having with my beloved coffee, and my overall fatigue? Well, here's an update and a visual aid.

Marty and I drove up to New Hampshire Sunday morning to visit friends from our Costa Rica Days. Patty and Jeff have a lovely cottage on Beaver Lake in Derry. That we were even making this trip was a minor miracle. To find a window between chemo recovery and transplant that would coincidently fit into their summer schedule seemed unlikely even a week ago. But by a serendipitous turn of events, there I was on an unexpected overnight trip.

Honestly, I was hesitant about the idea from its inception. I'm not well, my counts won't be high enough, I just want to be at home, I still have my chemo catheter hanging out of my arm, the germs germs germs. I had to willfully move several of those neurotic roadblocks just to consider such a trip. It didn't hurt that Friday my catheter came out and I was free from that annoying reminder of my health status.

Sunday was a beautiful day weather-wise, and it was great to be visiting our friends. But still I felt that my battery was low and not really charging, and that I was making an effort to basically just sit on the deck and smile. Monday morning, after not enough sleep, I slowly realized the coffee tasted like, well, coffee. Not completely, but going in the right direction. A couple of hours later, the four of us went for a walk around the lake, which I was questioning whether or not I could do since it was much longer than any walk I'd taken post-chemo. Suddenly, I found myself back at Patty and Jeff's house barely able to believe I'd walked 2+ miles. But wait, there's more.

Jeff and I parked ourselves on the deck with beer (non-alcoholic for me) and a bowl of peanuts while Marty fished and Patty ran a few errands. After we'd consumed all the peanuts, Jeff turned to me and asked if they tasted good to me since nuts for most of us need salt to taste like anything. Briefly confused, I put my finger into the bottom of the bowl to pick up nut remnants and grains of salt. When I licked my finger, the revelation hit me, and I stood up and shouted "I can taste salt."

We'd already been discussing the restorative powers the "lake" seemed to be having on me that day, but this seemed like true miracle material.

Now, you might be thinking, this woman is a self-absorbed lunatic. You may not even have read this far. So be it. But there was a miracle on Beaver Lake, and I have the picture to prove it.



That's me with the can of peanuts that woke up my taste buds from a long nap, about 20 feet from lake's edge. The cars are lining up and the believers are streaming out with little bottles to collect the waters. There's talk of having a statue made of me to place in front of the cottage for people to stroke and find illumination. My friend Patty is pondering financial angles. I'm just beyond thrilled and a true believer. I don't feel this way often.

For Graham

It's taken me a week to be able to write about this. On July 2nd, a man I never met and very minimally communicated with died of complications due to a double-cord transplant he had almost a year ago.

The first time I heard about Graham and his battle with leukemia was reading a post his wife Sam had written on the Leukemia and Lymphoma Society Discussion Boards asking for input and advice. Graham and Sam live in Australia, and felt they'd exhausted treatment options there. Sam sent me several emails, and as a fellow double-cord transplantee, I shared whatever I knew about the procedure, the recovery and the emotional stress of the whole process.

Graham, who was 44, traveled to the U.S. to have his transplant at the Fred Hutchinson Center in Seattle, WA. To pay for the transplant, the family started a massive fundraising campaign. This campaign continues and can be found here.

I have been following Graham's story closely since the Spring of 2008. I remember running in the CVS-Providence 5k last September thinking about him and his struggles, gaining strength and inspiration from his determination to beat this brutal disease (and he did beat it, dying disease-free). I've often thought to myself, compared to Graham, I have skirmished; he has truly battled.

Though we never met face to face, I've walked in Graham's shoes and he's walked in mine. This may seem like an odd bond, but it's a very real one. With of the loss of Graham, I lost something, too.

Today is Graham's memorial service. You can be sure I'll be thinking about Sam, his two young children, friends and loved ones. I wish them solace, great memories and a maelstrom of love. I'm feeling sad, but I continue to be inspired by this man I came to know through his amazing story.

Walk on, Graham, peacefully, hearing the tunes you love.

Breaking News

Just got word that the pathology report shows no evidence of leukemia. It's not an "official" remission, because there weren't enough cells present in my marrow to be absolutely definitive. But it is very good news, and I can now crawl out of my tunnel and breathe.

Tastes Gone Missing

I don't like foods that are too salty. Most packaged food overwhelms me with salt. But suddenly, I can't taste salt at all. When a potato chip doesn't taste salty you know something's wrong.

This is a minor detail in the scheme of things, although it does make much of what I eat taste like nothing. I'm sure the phenomenon is explained by temporary chemo damage to my taste buds, or possibly some drug I'm taking.

Worse than the missing salt chord, however, is that my beloved coffee doesn't taste right. I drink it black with no sugar, because I really love the pure taste of coffee. Now, it tastes like a weak version of the brew no matter how strong I make it. Again, I'll live; it's just disappointing.

Chocolate has not changed, and for this I'm very happy.

Black Bandana

Yesterday was a long day at the hospital clinic. The night before, my temperature had slowly crept up to 100.8 and I have to call my doctor at 100.5. After carefully quizzing me over the phone, he said to monitor for spikes and chills, otherwise come to clinic first thing in the morning.

I woke up with a temp of 99.8, lower than the night before. We arrived at the clinic at 9, and after a blood draw, I had a bone marrow biopsy. My temperature at this point was normal, and I thanked my doctor profusely for not bringing me in the night before.

Because there was no room for me in the infusion unit, I had to enter the main hospital as an in-patient. This was actually a good thing because I had my own bed in a private room (my favorite corner room, no less) with nurses I have come to really know over the past two months. We didn't walk out of there until 8 pm, but I found an interesting way to amuse myself. Since my hair was coming out in hanks anyway, I gently pulled almost all of it out, trying to get as much as possible in the garbage pail. I was a little uneasy about leaving an unsightly mess behind, but I guess dried up hair is better than most of the other patient messes they deal with.

Today has been a good day. I haven't been out yet due to the rain, but I had the energy to take care of some administrative details, and that never fails to cheer me. Hey, I'm not totally worthless.

The hand-pulled hair left quite a few tufts and odd stripings behind, so I hauled out the clippers and after carefully sterilizing the blade, finished off the shave with the help of my darling husband. The same darling who then had to de-hair the bathroom because it too needed a shave.

I put on a black bandana, some earrings from Africa, and a smile.

Cute Hairdo Down the Drain

Remember that haircut I gave myself a few days ago? It was all for naught as my hair started to fall out yesterday big time. I have very thick hair, so it could take a while, but baldness here I come.

Apparently, the first round of chemo I had in May was not toxic to hair follicles, but the more recent one was. I have mixed feelings about being bald. People stare at me (not that I get out much); strangers walk up to me and tell me about how they had cancer; I am somewhat vain and prefer to have hair, even though I wear it very short.

On a bright note, Marty and I went over to a friend's house for dinner last night which was a nice treat. I even managed to stay up past my bedtime. The new anti-nausea medicine I'm taking seems to have solved my morning-sickness woes, a big plus.

Take my hair, I don't care. Just let me feel good.

Good Days Bad Days

Tuesday was a really good day. I had lots of energy and even made a list of things to do. I did things off-list as well, like give myself a haircut. Yes, I inexplicably still have hair, lots of it, and I was developing an unsightly mullet. Whack.

I managed to get through the day without taking a nap, although I paid for this later when a zombie took my place at the dinner table, and I was still bugged-eyed well past my bedtime.

Wednesday was a mixed bag. I didn't need any "products" at the clinic, but I found myself paying the piper for Tuesday's overindulgence. Boy, that 3-hour mid-day nap felt good.

What will today hold? It's starting off on the right foot in that I'm not nauseous. Also, there's a chance the sun might come out later today (we haven't seen it in 3 weeks) and I might be able to spend time in my serenity garden.

My goals for the day include keeping my temperature low, destroying evil white blood cells, and rolling all my strength and any sweetness I can muster into one ball.

Sometimes you have to think big.

Freakish Symptoms

By Sunday evening, I'd developed some nasty bruising on my body and worse, several painless "blood blisters" in my mouth. I've experienced plenty of weird symptoms due to low counts, so I was able to take these mouth issues in stride. At least they didn't hurt.

Not surprising, I needed platelets yesterday. My doctor took one look at my mouth and pronounced I had such-and-such. Sorry folks, I have so much cancer-related terminology clogging my brain, I let that one float up into the ether.

Tanked up on platelets, I returned home and promptly fell onto a deep sleep. This was no nap. Then it was bed by 9:30. Low counts equal low energy. Zzzzzzz.

18,000 Platelet Survival Guide

I spent 3 long hours at the clinic today. Since they didn't draw my blood until well after I'd seen my doctor, I didn't feel like waiting around to get my counts to see if I needed any "products."

So we came home, figuring we could always go back if we had to. This gave me the advantage of eating lunch in comfort and taking a nap. Never underestimate the power of a nap.

It seems I wasn't in critical need of platelets or red blood cells, although I will probably haul through most of the platelets I do have by Monday, when I return to the clinic. In the past, I've been down to as low as 3,000 of these blood-clotting agents without showing any symptoms, so I feel confident I'll make it. But to make sure I do, I plan to take the following precautions:

use no knives

brush teeth cautiously with special foam brushes

avoid brawls and falls

temporarily cease exercising except for walking

no yelling (I rarely do)

This should get me through the weekend expending the fewest platelets possible. I have no white cells, but there's little I can do about that except avoid people, wash hands well and stick to my low-microbe diet. No big fat strawberries for me.

Serenity Garden

That's me yesterday afternoon enjoying my serenity garden. It's a small area near our garage that had been overgrown by a tall spruce and a gangly cedar, plus a stray rhododendron and a couple of azaleas. My sons ripped all that out last summer, and then my husband and I added just a few plants in the Fall. For Mothers Day, my husband painted the adirondack chair Mark had made in wood shop four years ago. We found some old paving stones out back and made a little seating area. Then a friend brought over a few additional plants to to fill in (note: grasses), which Mark kindly planted for me.

When I came home from the hospital yesterday the first thing I did was brew a cup of tea and head out to the garden. It really was serene, a nice refuge after spending six days in the hospital assaulted by chemotherapy.

I think I will be spending some time in this garden in the days to come, watching birdlife, reading, healing and just being.

Out of Commission

I'm finishing my last day of chemo today. It hasn't been too bad. Sorry for the lack of updates--it seems my vision has been slightly affected, resulting in piles of meaningless drivel. I know my readers expect much more.

The vision problem should resolve. Actually it might be more of a transcription problem. I fail to type the correct letters--and I don't even realize it. Marty is helping me with this post to make sure you can read it.

With luck, I'll be discharged tomorrow, but there always seems to be something up a doctor's sleeve (usually a small note with the word NO written on it.) I could sink my own ship by suddenly developing an unexplained fever.

We will hope for the best.

The picture tells the story: It was sunny; it was graduation; we were happy. My oldest son, Mark, earned his high school diploma on Sunday. That's grandma next to the graduate.

We went out for dinner to celebrate, and because Marty had requested a table that didn't get much traffic (I'm still neutropenic), we were seated in a private room. The food was rich and delicious, so by the time we went home to cut into the cheesecake Mariel had baked, there were no takers. We had no choice but to have a healthy slab of it for breakfast the next morning.

All the fun and games end for now. I'm to be at the hospital in an hour for a heart scan, a test that determines if your ticker is up to additional toxic assault. I'll check into my room and the chemo will start dripping by mid-morning.

I'm trying not to be too morose. Looking at the graduation photo makes me smile. I know what I have to do.

Food for the Soul

One weekend while I was in the hospital, my husband brought me The Sunday Times. The Magazine Section had a recipe for spaghetti primavera, one of my all-time favorite dishes. Hospital gruel is the opposite of this dreamy food. I promptly tore out the page and hung it on my wall to remind me that as soon as I was able, I was going to have this dish.

There are simpler ways to make pasta primavera, but Le Cirque's version is sublime. With family coming in for my son's graduation, I thought it was the perfect time to expend the effort.

I once made this dish 20 or 25 years ago, probably with a squadron of wine-swilling guests to help with all the chopping and steaming. In my current state, especially without a glass of wine, it was considerably more difficult to pull it off. I had to do the final steps strung up to my IV pole.

It was delicious, incredibly rich and laden with all the vegetables I haven't eaten in the past month. I almost swooned.

My guests liked it, too. I made sure there was a serving left to save, and I hid it in the back of the refrigerator. A few minutes ago I had it for lunch, a soothing and tasty antidote for the hospital food I'll be picking at tomorrow.

Remission Unaccomplished

This is the nature of leukemia. It lurks and it waits and it jumps in at any sign of vulnerability. Strong chemo may only wipe out half the clones, and you might need to throw more toxins at it. My bone marrow biopsy shows I still have a little leukemia lurking, but it must all be destroyed. To that end I re-enter the hospital on Tuesday June 9 where I will try a new cocktail. The good news is, I have three days to party!

The fungal infection in my lungs is responding to the drugs, so that's good. This is difficult to treat, so at least we're making progress on that front.

We had a family dinner last night--just pizza, just perfect. We have lots to celebrate this weekend. Then it's back in the slammer.

Visitors welcome.

Day of Reckoning

I thought I'd spend these few moments ruminating about the day ahead. I feel strangely calm and know that whatever path I take today, I won't walk alone.

After a pre-transplant dental evaluation, I have an appointment with my oncologist to find out the results of the bone marrow biopsy he did on Monday. I'll have lab work done to see where my counts are, and also a repeat CAT scan to check the fungus in my lungs. If I'm on the right medication, and they've identified the fungus correctly, there should be some improvement.

If the biopsy shows I'm in remission, I have a date at Dana Farber for transplant #2 on June 12. That's when the pre-conditioning would start, with transplant about a week later. If the leukemia is still kicking around, I may need another course of chemo--difficult to fathom thinking back on the past 5 weeks. Transplant could be delayed, although if the leukemia isn't out of control, they might still recommend I go straight to transplant.

In the meantime, I have a lot going on this weekend--all good things, the things that make me stay in this fight. Mark is running in 3 events at the RI State Track Meet on Saturday. On Sunday, he graduates from high school. I will have to wear a mask to graduation, but that's a small price to pay to be able to attend. I'm sure people will steer clear of me, thinking I'm the infected one.

Morning on Moosehorn Road

I walked out of the hospital yesterday at 10:30 in the morning, and spent much of the afternoon lazing about with Mariel watching food shows. I also organized the many piles of papers rising from various surfaces around the house, which brought me joy entirely out of proportion to what I actually accomplished.

We walked the dogs to the corner and back. Marty made a delicious dinner. I passed out around 9:30 pm, in my own bed.

Right now I'm sitting at my kitchen table drinking coffee, peace rising from the cup.

This is living.

Blue Jeans

It's 10:00 am and I'm sitting here in my street clothes (including real shoes) waiting to be released. Not that release is necessarily imminent (no doctors have signed off on this), but I'm determined to walk out of here today, sooner rather than later. I will not spend another night in this hospital.

My daughter is flying in today, and she has offered to come here and cry on my behalf. I don't think this will be necessary. My blood counts are still in the doldrums, and I have no idea if I've achieved remission or not, but I'm otherwise okay. My only complaints are all directly related to my incarceration: lack of sleep; poor diet; lack of exercise; mental stress.

"Scuse me while I kiss the sky."

Day at the Beach

Everyone needs to escape now and then. People in my situation, stuck in a hospital room having plenty of bleak, scary and sickening moments, often feel there's no escape. I found one.

I've discovered a way to visit every beach I've ever been to in Costa Rica. My mind focuses on these wonderful scenes and happy experiences, to the point where I can hear the surf and see palm trees waving in the sea breeze.

Yesterday was one of those especially trying days in which I had to travel to a very special beach, Playa Gringo, located on the mid-Pacific coast. Playa Gringo can only be reached by boat, really only by sea kayak, so it's ultra private. The white sand beach is crescent shaped, with perfect blue-green water, and is backed by a sheer cliff. You feel protected, as though you were in a cradle. The only people there are the people you know and want to be with. You can't help but relax, wrapped in a blanket of peace and happiness. It's truly a sanctuary.

I sense I'm going off the deep end a bit, so I'll end my description of paradise. You can see why I want to be there.

Update on yesterday's post: Since many of you have asked, I actually accomplished more than half the things on my to-do list despite the challenges of the day. I even did some of those things on Playa Gringo.

Goals for Today

1) eat chocolate

2) cast spell on evil nutrition nazi

3) invent under armour hospital gown

4) don't dream it--be it

5) create white blood cells

6) do stomach crunches (note: find stomach)

7) brush up my Shakespeare

9) laugh (and yeah I skipped #8)

10) live a little

My Blood Pressure Also Rises

Freedom lasted 28 hours. At least I had a chance to see my white azaelea in full bloom and enjoy a few meals. My temperature just kept climbing and I had no choice but to head back to my cell.

Sunday passed in a delirious blur. I finally mustered the wherewithall to start receiving some real pain meds instead of mere Tylenol, which when your fever is 103-104 is akin to putting a bandaid on a gushing wound. We settled on Percoset, and let me tell you, I had much better pain relief. The only problem is that no one had the cujones to actually write an order for this drug, so the nurse had to request it one at a time. Unfortunately, my doctor was away for the weekend. Sometimes the Percoset came too late. It's really true that you have to stay ahead of the pain.

A bit of good news arrived Monday afternoon with the report that I actually have some neutrophils showing up in my blood. They're the infection-fighting white blood cells that are the body's first line of defense against intruders. In theory, once these babies start being cranked out in larger quantities, my fevers should become just another nightmare memory to paste in my Bad Times scrapbook.

Today has been a much better day--no real fevers, although I recently registered a 100.6. But something got my blood pressure up today, and I want to unload my anger about it here. The hem-onc fellow came to see me this morning and it did not go well. First he told me I shouldn't be taking Percoset because it doesn't work for me.

Oh really? I was too polite to say, how the hell do you know, although I did insist it took a big dent out of my suffering. Apparently, pain is bad; but suffering is just part of the human condition and we must bear up under it.

Then he tried to delve into my psychological well-being, suggesting I consider taking an anti-depressant. Let me suffer but keep me numb. This was starting to feel like oppression. I told him I'd once tried Lexapro, but after 2 doses had to quit because it made me feel physically awful. He doubted that of course, saying how it was such a clean drug. Maybe he takes it.

I'll spare you the rest of the arrogance. Dr. Luvstosuffer ended up canceling the order that some doctor had finally written for Percoset as needed. I'm still fuming. I know I should just let it go, but I can't.

Update: my doctor came to see me a little while ago and re-wrote the order for Percoset, which with any luck I won't even need.

Small victories.

Free, and Trying to Stay That Way

I was paroled yesterday around 7 pm. The conditions of my release are that I monitor my temperature carefully and immediately call the doctor if it hits 100.5. I also have to take it very easy since I won't be having any bloodwork until Tuesday, hence no transfusions either. I also have to have iv meds three times a day, which Marty will handle once the pump is delivered.

Marty made me a lovely linguine with white clam sauce for dinner. I managed to gain 10 lbs. in the hospital, all water weight. I'm a little puffy around the abdomen and my feet are a size bigger.

Excuse me while I go pour myself a cup of freshly brewed Costa Rican coffee. Maybe I should ring for the butler?

Tortured Notes

They're trying to kill me here. They've made me into a sad and grumpy borderline maniac. Tell me if this doesn't resemble waterboarding.

They're pumping me with fluids even though my fever has been gone for almost 48 hours. I spent the entire night peeing like a horse and drowning in my sweat. I dreamed about floating down a river. I was in an aqueous dishumor.

This morning when my new nurse walked in (her name is Cherish), she mentioned something about hanging my next bag of meds. After my harangue about how the dam was about to break, I said I was pretty sure that antibiotic had been eliminated. Off Cherish marched to call my oncologist and the Infectious Disease Doc.

Good news: no more iv fluids, and yes, that drug is out. The complaint switch is stuck on the on position.

My doctor wants to keep me here over the weekend. I'm already a piece of heavily crazed china bordering on breakage into a million pieces. I'm going with Psycho Girl when he comes in. The problem is, I'm so angry my acting skills might be shot. Should I perhaps roll up in a ball on my bed and be mute? Should I be a fire-breathing dragon and go for the burn? Rational logical charming PJ's not working for me here. Dragon or fetal curl?

No woman, no cry.

The PJFF Wants YOU!

The PJ Freedom Fund is now accepting contributions. Here's what I need:

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

Can someone find out why my hair hasn't fallen out yet? It should have by now. I don't feel like shaving.

After reading an article about how the H1N1 virus doesn't seem as virulent among those born pre-1957, I wonder whether I fall into the stats or the cracks. I was born in 1954, so I could theoretically have some immunity to this disease, a good thing because I'm sure I'm in the high risk category for it. But it's complicated. My old immune system was fried out of me during my transplant and replaced by the immune systems of two babes born in the late '90's. I suppose if they had acquired some natural immunities from their mothers, they'd give me a little protection. However, their mothers were probably born post 1957. Poof. Immunity gone?

And now we shall all sing:

Way down in hospital land
tell all physicians to
let my pj go
let my pj go
let my pj go.

Jottings of the Day

In the hospital, life gets reduced to the elementals. My time here is spent undergoing various tests (liver looks good!), getting and giving fluids, suffering feverish episodes, and trying to keep my psyche from imploding. I have removed it and hidden it in an obscure drawer for safekeeping.

I've basically been transformed into a large and fertile irrigation ditch. Liquids go in, liquids go out. Fevers bubble and brew.

I realized I haven't been wearing earrings.

Today I ranted about musicals and why I hate them, especially The Man of La Mancha.

My brief taste for hospital food must have been a feverish delusion. I just sent the meatloaf marching.

My childhood sweet tooth has emerged and must be fed vast quantities of sugary foods or it is very angry.

I think I'm feeling a little better.

Hot Hot Hot

Because I have so few white blood cells, my body decided to start cooking me from the inside. It started late on Friday, just after I watched my tuxedo-clad baby drive off to meet his date for the prom. Tempus fugit.

By Saturday morning I was back in the hospital, where I remain. Every 4 to 6 hours I spike a fever, despite being pumped with antibiotics and anti-fungals. No specific causes have been identified as responsible for the fevers. It's just that I'm in a state of neutropenia, low on infection-fighting cells, and my body's natural response is to use heat as a weapon.

Somehow, I manage to have an appetite and have been tolerating the hospital food. I am ruined.

Thanks everyone for following my story. I love reading your comments and emails. Any day now, blood cell production should kick in and these feverish days will be just a bad memory.

Hemoglobin the Hard Way

My clinic appointment yesterday was grueling. I was in dire need of blood, so my doctor ordered 2 irradiated units. I had already negotiated with my doctor to eliminate the steroid pre-medication (I still got Tylenol and Benadryl) because it had made me so nutty during Monday's platelet transfusion. That turned out to be a very bad idea.

Half an hour into the transfusion, they checked my vitals and my blood pressure was something like 77/46 and my temperature 101 degrees. Oops. The transfusion was immediately stopped and I had to get the steroid anyway and wait for my signs to improve. Interestingly, I didn't feel woozy or even especially hot. Whatever. An hour or so later, blood was once again flowing and I appeared to be fine. They checked my signs every 20 minutes to be sure.

Transfusion #2 didn't get underway until 5 pm. The additional pre-meds made me jumpy, and the easy-chair I was sitting in had lost much of its ease. They'd pumped me full of fluids, so I spent much of the time wheeling my pole into the bathroom (my, that sounds off-color) and then walking back to my uneasy chair.

We sludged out of the clinic at about 7:15. The blood had given me a bit of a boost I suppose, but I was way too exhausted to notice. I slept most of the ride home.

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

Navigating the Nadir

The only body part firing yesterday was my brain. I guess that organ takes minimal blood cells to function properly. This may be debatable.

I spent most of the day sitting, chatting on the phone and writing. I wrote a letter to President Obama about some policy issues as they currently affect me and my family. At one point, I got off the couch and took a shower, and then went on a slow walk with my husband. The couch beckoned once more, and there I remained parked for most of the afternoon. Time passed extremely quickly for some reason, and before I knew it my husband was back from shopping and my sons home from school/practice. It was time to move on to the next room, where I draped myself over my chaise and demanded tea and crumpets. We were fresh out of crumpets so I had a biscuit.

My husband made dinner and I read a little. I listened to all four sides of Stevie Wonder's Songs in the Key of Life. I even read the liner notes (yes, I'm talking records here; we actually have a turntable). This was good for the soul. Thanks, Stevland.

I managed to stay conscious until roughly 9 pm. What I don't understand is, if I'm essentially doing nothing, moving oh so slowly through the day, why is time speeding up? It's a conundrum wrapped inside a paradox parading as an enigma.

Mellow Yellow

As expected, I needed a platelet infusion today. My CBC showed I only had 3,000 of those clotting babies, whereas normal is 150,000-400,000. It's possible that merely typing this post is risky. I will type softly.

My reds are also on the low side of low, but my doctor opted not to transfuse me as I'm asymptomatic, that is, I'm still breathing. Looks like I've reached the "nadir" in my counts. This is a certified SAT word, so if you know a student currently embroiled in applying to college, be sure to mention this. Nadir=the pits, the lowest point. That's where you'll find me.

I've also been running a low-grade fever since yesterday, 99-100. This is my body's response to the low white blood count situation. I'm willing myself to stay under 100.5, because when my temperature hits that, I'm cooked. I have to call my doctor and most likely be admitted to the hospital for antibiotic infusions.

You may be wondering why I've titled this post with a Donovan tune, other than the fact that I'm probably doing way more drugs than he did when he wrote it. Mellow Yellow is my name for a bag of platelets which are a soft, creamy yellow. I guess it did mellow me a bit, because I slept away the afternoon.

Kafkaesque

I picked up Kafka on the Shore, by Haruki Murakami a year ago at Barnes and Noble. The book sat on my bedside table collecting dust and shooting me the hairy eyeball from time to time. Twice I tried to read it, and twice I failed to get beyond the first chapter. Some books just have to be read at the right time, a time that had not yet come for Murakami's book.

Apparently, six days of chemotherapy and its lingering effects put me where I needed to be (trapped?), and I finally made it to the second chapter. Maybe the fantastic, the gruesome, and the incomprehensible go down easier when the reader is experiencing her own tenuous grip on reality. Brain damage is also a handy excuse for being unable to comprehend much of what happens in the novel. I was a lot less likely to question serious breaks with reality, a lot more willing to accept the odd, the outrageous, and the frequent challenges to the space-time continuum.

Kafka on the Shore is partial to libraries, to books, to metaphor--my safety zone. Its two main characters include the 15-year old Kafka, who's a voracious reader, and an older man who's completely illiterate. A major theme of the novel (and a favorite of mine in general) is how memories are made, stored, changed and passed on. Kafka walks away from the novel with a memory of his mother, a personal fulfillment of his quest.

The book is mysterious and compelling. I was hoping for a few more "answers" but settled for the fleeting insights and tenuous connections drawn between past and present, male and female, violence and kindness. Kafka on the Shore is at once a song, a painting and the novel itself. You'll have to read it to know what the heck I'm talking about.

In Leukemia News, I'm remaining fever-free and struggling to put some shape into my days, which float by cloaked in shapeless housedresses--a flash of floral and then they're gone.

No Neutrophils

It's official. The chemo has knocked out all of my neutrophils, the first responder white blood cells that appear at the scene to do battle with pathogens. I'm on my own now, trying to limit my exposure to bacteria, fungi and other nasties.

I don't know if my defenseless state had anything to do with it, but I spent much of yesterday parked on the couch. Marty and I took a short walk in the afternoon, and that used up all my energy. I spent the rest of the day reclining on my chaise longue, drifting in and out of consciousness. I managed to drag myself to the dinner table and consumed two enchiladas (Sexto de Mayo--we missed Cinco). Then I did another hour of couch time before crawling up to bed at 8 pm. You'd think that after 10 hours of sleep I'd be raring to go, but the only place I'm raring to go is back to bed.

This extreme lack of energy is normal--my blood cells are dead or dying. Hopefully, the leukemic cells are experiencing a slow and painful death, Geneva Convention be damned.

No plans for the day. I'm giving myself up to extreme lassitude. Were that I were relaxing on an empty stretch of beach sipping a margarita.

Infinite Jest--What Would You Call It?

What a difference five days make. When I left here last week to enter the hospital, my yard was still cloaked in grays and browns. A little warmth and a bit of rain have transformed the place into a lush green landscape punctuated with pink blossoms, arching forsythia and the occasional daffodil and hyacinth. For the first time in years, the dogwood is actually blooming. In contrast, I was a picture of rosy health last week, and am now reduced to a barren landscape.

I'm parked on my chaise longue feeling like a slug, and probably not looking much better than one. On one hand, the toxins are exiting my body; on the other, my counts are dropping and I feel listless and unmotivated. I have surrounded myself with heady reading material. Even if I fail to turn a page, I am among books I hope will lend me the gravitas I currently lack.

Kafka on the Shore is providing me with gruesome scenes involving cat decapitation and quirky plot twists. I have no idea where this book is going, but it's certainly surprising. In the What Was I Thinking Category, I ordered Infinite Jest from the library, a 1000+ page footnoted tome I've been planning to read for some time. Now that I have the luxury of huge blocks of time waiting to be shaped and managed, I hope to finally tackle this heavy book. And I do mean heavy. I can barely lift it.

Time for a nap.

All My Trials, Soon Be Over

The cumulative effects are starting to kick in. Eating is a challenge. The three books I brought to the hospital thinking I'd get some reading done mock me from across the room. I think it's Sunday.

I get one more round of clorfarabine tomorrow and then I'm done. I plan to get out of this place Tuesday. The crabapple's in full bloom, one of the most beautiful sites you'll ever see in my yard, and I won't miss it.

Friends, I feel your power pulling me toward the light.

No Exit

The visitors come and go, perhaps talking of Michelangelo, I wouldn't know. I drift in and out of consciousness as the chemo seeks and destroys the bad guys, taking out good guys, too. I can't be much of a host, so my guests amuse themselves while I lie in bed uncharacteristically mute. The day passes, as does the headache, thanks to Percoset.

Karen and Rob have driven down from Boston, bringing me coffee beans from their finca in Costa Rica. They chat with my brother George who's flown in from Atlanta. My husband and son Harry also come and stay for a while.

At this point, the haze has worn off and I manage to keep my head upright for a time. My son Mark arrives and spends about three hours with me, which is nice because we don't usually have a chance to just hang out and chat about nothing and everything. I'm honored he's chosen to spend his Friday night with me instead of with his friends. I feel like I've gotten something right.

The night is punctuated by headaches and beeping infusion pumps, an ocassional ambulance siren piercing through the hospital hum. I dream that I sneak out of the my room and manage to drive myself home. But I've forgotten my clothes and I feel guilty about letting down my doctor. My bold escape feels childish, and I realize it's no escape at all. Leukemia sounds an all-points bulletin, and I am swiftly rounded up and returned to my cell.

Then Day 4 begins.

Temporarily Offline

Day 2 of my treatment starts off bright and productive. I read Kafka on the Shore, answer emails, receive phone calls, and peruse the LLS Forums. I do 10 laps around the unit, shower and devour my breakfast. It could be like any other day, but at noon the pre-meds arrive along with an unappetizing lunch. Two hours of ara-c followed by a short break and then some more pre-meds, this time a steroid, ending with an hour infusion of clofarabine. This flattens me, and although my brother and my son are in the room with me, I am alone and feeling the effects of the toxins. I drift in and out, and finally ask for some iv ativan.

Everything seems difficult to do. Just getting into the bathroom requires untangling of wires and jockeying the plugged-in pole hanging with meds into a small space. I manage. Between my dance pole, my laptop with dial-up cord and my cell phone plug, wires snake everywhere and follow along behind me as I go through the motions.

I could be at home having dinner with my family, just like any other night. But I'm here in this sick room while life continues without me. How did this happen?

Ma, Meatloaf!

Dinner arrived at the stroke of 5; I usually eat around 7. I lifted the edge of the plate cover and glimpsed the rectanglur brown matter within: meatloaf, the ubiquitous institutional fare, floating on a sea of viscuous taupe. Having just completed my first serving of ara-c, I couldn't face the mystery lump coagulating on the plate. I replaced the cover and ate the roll. The lemon square was tasty.

If she's complaining about the food, the experience can't be so bad.

We arrived at the hospital at 8:30 am to have my PICC line inserted. That's where they'll infuse the poison that will kill leukemic cells. First they tried my left arm. No go. They settled for my right, and I was soon escorted to my single room on the 6th floor. My room is light and airy, with the bed facing the large window that peers out over houses, trees and a sluggish stream surrounded by ominous industrial contraptions. Love canal?

Marty stayed all day, and Mark spent about 4 or 5 hours visiting. I snoozed on and off as the ara-c dripped into my veins. If only I could remain unconscious throughout the next few months. I would have no awareness of the constant stream of meatloaf passing through my room.

It's 6:30, and the sun is sliding out of view. Day one can be checked off. It'll be interesting to see if there will be sleep here, in between the meds and blood draws and the constant beeping of machines.

Tomorrow I get a menu so I can avoid the tyranny of the meat wad sauced over in mud.