Wednesday, July 29, 2009

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.

Sunday, July 26, 2009

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.

Friday, July 24, 2009

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.

Wednesday, July 22, 2009

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

Saturday, July 18, 2009

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

Wednesday, July 15, 2009

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.

Friday, July 10, 2009

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.

Tuesday, July 7, 2009

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.

Sunday, July 5, 2009

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.

Thursday, July 2, 2009

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.