Best Halloween Costume Ever

This afternoon I had blood drawn for a PCR remission test (described at the end of Go FISH). I'll receive the result next Monday.

Ryan and I are more nervous than we should be. The oncologist says the test should show that I'm cancer free. We believe him, mostly. But there's a part of us that can't stop worrying. A year ago, we thought nothing could go wrong. And then something did go wrong.

Welcome Chase Robert!

Announcing... Chase Robert... our beautiful, healthy new nephew, born four weeks early and weighing in at 6 pounds, 15 ounces, and 19 1/2 inches tall.

Congratulations to Jeff and Jen, and big sister Elise!

For four weeks early, he is a big boy. If he turns out anything like Jeff, his job of being Elise's protective brother will be an easy one.

We cannot wait to meet and hold him. Katelyn has already added Chase to her prayer list. Currently, he comes after "God bless Sleep Sheep" and before "God bless Mickey Mouse." Once she meets him, I'm sure he'll move up the list.

We're so happy that our family has been blessed with this adorable addition.

So Much for Pumpkin Picking



My impatiens, patiently waiting for the blizzard to stop

For the past two months, during the treatments and their side effects, I had been looking forward to October 29th. We had reserved the nearby farm's 4:00 pm hayride slot for a pumpkin picking party for Katelyn and her friends. Conveniently, her friends' parents are our friends. So not only did the prospect of the party give me something more pleasant to think about than cancer (without having to do any of the prep work), it was supposed to be a way to celebrate the end of this phase of my treatment with our friends and my parents, who have done so much to help us.

Of all days for a freak October snow storm to hit, it had to be October 29th. Friday was beautiful. Sunday is beautiful. As the snow fell midday, we debated whether the developing conditions warranted calling off the party, which the farm had said we could hold inside. I felt like standing in our front yard and yelling at the sky, "Seriously God, can't you just give us one break this year?" That's what I would have done if I were an actress in a movie.

Junk Mail

Friday I received a form letter in the mail announcing that a certain hematologist was switching practices. I was only his patient for two days. He was the one who examined my blood sample and prepared transfusions to have on hand in the operating room before the high-risk procedure to remove Lily. He was also the one who discharged me from the hospital the following day, despite my complaint of acute side pain and my abnormal blood counts.

Another hematologist, who knows him, has told me he felt terrible for missing my diagnosis. I am sure he did. It took us weeks of effort to get my records from those two days. Maybe there was some fear of litigation. It was unfounded. His form letter Friday brought back a flood of memories that kept me up that night.

Climbing Back Up

The worst is over. Hopefully forever. My white blood cell count must be higher by now, though I didn't have the tell-tale bone pain like I had as I started to recover during the last two rounds of chemo.

As long as I don't relapse, I am done with the heavy chemo forever! Over the next two weeks, I'll continue to feel better and will regain my strength.

November 7th, I begin consolidation, which consists of ATRA pills (the migraine medicine) for 15 days every three months for two years.

The Bottom

Dr. Goldberg told me at my appointment today that I've hit bottom. No, not in the "my life is in shambles and I've taken to the bottle" sense. My white blood cell count is 1.4 (average healthy range is 4.3 to 10.8).

Come on White Blood Cells, I Need You

My blood cell counts are nearing their lowest levels.
Katelyn woke up with a raspy voice and a temperature of 99.9.

I'm so thankful Sheila is here for the next week. She will make it so much easier for me to avoid my daughter. Wow, that pronouncement sounds so wrong. (Katelyn, I love you, a lot, even though you don't cover your mouth when you cough.)

100.5's the magic number. That's the body temperature at which I'm supposed to contact the cancer center. It's also the number I'm hoping Katelyn's temperature stays under, which would suggest this is just a blip for her. It's hard to see her not feeling well. I can't imagine what it's been like for my parents this year.

Kelly the Caregiver



L: Shelley , R: Kelly
(pre-APL)

This weekend, Kelly, my close friend since age six, stayed with us. It was a blessing to have her helping us, given I wasn't exactly in prime shape. Katelyn took an instant liking to her, and declared Kelly "her" friend. By the end of the weekend, Rob was also referring to Kelly as "his" friend, since she was a lot more fun to hang out with than I've been.

Saturday evening, Kelly whipped up a meal from the cookbook, Eating Well Through Cancer. As we were sitting down to dinner, I asked her what section of the book her Mexican chicken casserole had come from. (The recipes are categorized by which side effects they can help alleviate.) In addition to the nutritional advantages, if there was any psychological benefit from eating a meal prescribed by a chemo cookbook, I wanted to realize it.

Kelly picked up the book, flipped through it, and said, "Oh, I didn't notice the recipes were grouped that way." She located the Mexican chicken casserole, and laughed.

"What's it supposed to help with...?" I asked with trepidation.

Book Review: Eating Well Through Cancer

 

 

Holly Clegg's "Eating Well Through Cancer" is a great aid for caregivers and patients. Not only are the recipes simple and appetizing, but the book takes a healing approach. The recipes are organized by the side effect they are intended to help mitigate. For example, there are sections for patients with Neutropenia (high fevers) and those needing high caloric meals to help them gain weight.

I am not much of a cook, even more so in my present state, but my friend, Kelly, made two of the recipes this weekend (pictured below). They were both delicious, and once I am recovered I will try some of the other recipes. I don't need chemotherapy as an excuse to test out some of these appealing meals.

Pictures of Kelly's creations:

Sometimes, Life Can Be a River Too



Compliments of Beth Hornby, Former University of Minnesota Rowing Teammate

 
While my forearms were wrapped in hot compresses to ease the continual burning sensation from the Daunorubicin infusions, I saw this photo, and it completely relaxed me. Beth snapped it last week along the Mighty Mississippi in Minnesota. By no means am I capable of exerting myself in an 8+ shell like that today, but if I close my eyes, I can almost feel the beauty and stength of it...

The BRCA Gene for Blood Cancer - GATA2

In September of this year, researchers announced that they have discovered a gene mutation that can cause, among other things, leukemia. The study, published online in the journal Nature Genetics on September 4th, explained that a mutation in the GATA2 gene has been associated with diseases relating to the development of white blood cells, including acute myeloid leukemia.

Scientists Find Gene Link to Blood Cancers

GATA2: Gene Defect that Predisposes People to Leukemia Discovered

As far as I'm aware, I have no familial history of leukemia. The article states that a genetic tests is/will be available to determine if a person is a carrier of the GATA2 error.

Last Dose - Hooray!

Dad sitting next to me as I finish my last dose of Daunorubicin.

Overall, today's session went better. On the way home, I didn't need the bucket that Dad had stored in the back seat of the car, just in case... Both my arms are really sore from the strong chemical being pushed through them--the left from the IV on Monday and the right from yesterday and today. The chemo didn't leak into my flesh, but it seemed that my veins were too small to flush it throughout my circular system quickly, so they spasmed. When I received the Idarubicin in the hospital in the spring, it was injected through a PICC, so I didn't have this issue. Over the next few days, applying hot compresses to my arms should help.

Final Day of Daunorubicin

Today is my final dose of Daunorubicin, ever! I'm near my "lifetime limit" of the class of drugs, so even if I were to relapse, I wouldn't be given more of the glowing red juice. In the off chance I have a relapse, my bone marrow would be prepped with other drugs--presumably ones that also glow--for a stem cell transplant.

The plan is to avoid that. The plan is to finish this Daunorubicin cycle and the two years of the maintenance drug, and move on with living.

Moving Past Day 1, onto Day 2 of Daunorubicin

I wish I could run, in a drop-dead sprint, through these next few weeks. Be done with this, having felt nothing more than sore calves and skinned knees from that one time I bit it when I didn't see the crack in the pavement.

Unfortunately, I haven't been able to run in years, and since any lingering tumor cells are hiding within my bone marrow, they would be traveling just as fast.

Yesterday's infusion didn't go as well as the three in September. The catheter was in the vein in my left arm correctly, so the Daunorubicin was flowing into my bloodstream, not into my flesh where it would cause damage. But the veins in my left arm had their own adverse reaction to it. The top and underside of my forearm were experiencing a burning sensation. So was my left shoulder. The nurse slowed down the injection and applied hot compresses, but I didn't begin to feel better until she'd finished the two chemo vials and had given me pain medicine.

Ten Tips for an Outpatient Chemo Infusion

As I get organized for this round of my cancer treatment, I thought I'd share a few tips for anyone who stumbles upon this link who's just begun his/her journey toward being cured.

Toughened Up

During a family cruise vacation several years ago, we participated in a shore excursion to Stingray City in Grand Cayman. Everyone was issued snorkel gear and a handful of dead squid to feed the rays.

The creatures, gliding below, looked so serene. If you put out your hand while holding a piece of squid, a ray would zoom by and grab the squid with the mandible on its underside.

I had my face in the water, admiring the animals' agility, when I felt a sudden, acute pain. I stood up, ripped off my snorkel mask, screamed, and began to cry. My family swam over to me, an all-out sprint with the aide of their fins.

Brooklyn Bridge Light the Night Event - Pics

We had a great time at the Leukemia and Lymphoma's Light the Night Brooklyn Bridge event last night. It was quite crowded, which is a good thing!

We did have to dodge the Occupy Wall Street protestors on our way to the South Street Seaport (ironically, Barclays Capital and Goldman Sachs were among the largest donors at the LLS event).

The evening was inspirational, marred only by the news of the loss of Steve Jobs.

Thank you so much to those who walked with us (pictured below), and those who donated (Mary Lou & Craig, Aunt Lynn, my parents, Ayarza, and Nicole).

FR: Julie, Erin, Laura
BR: Nicole, Molly, Shelley, Katelyn, Ryan

Train of Thought

A conductor on my train ride home yesterday evening hit on me. It took me by complete surprise. Cancer patients generally are not the target of smooth dudes, but I guess my hat looked like it was meant to provide warmth, given the cool temperature. He called me, "beautiful."

My immediate reaction to his compliment: "No, I'm not. I have cancer." I wanted to take off my hat and say, "Look at me. I'm not beautiful. I am broken."

Light The Night - October 5th

 

 

If you'd like to join our family this Wednesday evening for the Leukemia and Lymphoma Society's walk across the Brooklyn Bridge, please see the Event Details, and let me know, so we can coordinate meeting up.

Check-in begins at 5:30 p.m., but the walk doesn't start until 7:00 p.m. If you'd like to come but can't make it until 7:00, I can either check-in for you, or you can join us without having registered.

** A special thank you to Mary Lou and Craig for their donation, and to Lauren, who is organizing a team with her school friends to walk in the October 29th event in Santa Clarita, California.

 

Book Reviews: "Caught" and "Promise Me"

This year, I discovered Harlan Coben. "Discover" is really not the appropriate term, given he has 50 million books in print worldwide. I was, however, reminded how suspenseful and addictive his thriller mystery novels are. It takes a lot for me to want to stay in the infusion chair, with the needle in my arm, for a single moment longer than necessary. Yet when I was reading "Caught" and "Promise Me," I would lose track of time, and continue to read in that same chair once the nurse had removed the IV.