A Cancer Patient's Perspective: The Importance of Saying "Thank you" and "I Love You"

In the fall of 2011, I  recorded a video in response to a health advocacy group's request for tips for other cancer patients. At the time, I was between rounds of Daunarubicin, and too fatigued to figure out how to email such a large file to the video editor of the website. I came across the clip on my iPad this weekend.

As I watched the exhausted, subdued woman in the video rambling on, I couldn't help but shudder. But it does serve as a good reminder for all of us cancer patients/survivors to say, "Thank you" and "I love you."

 

Light the Night - Verona, NJ

We really are blessed to have such wonderful friends.

For the Verona Park, NJ Light the Night event, Team Life's a Beach had a great turn-out. The toddlers, in particular, had a very strong showing. Our friends have been so supportive and amazing throughout this health ordeal. We felt honored to have them walk with us.

My mom also flew in for the event (between Ryan and me in the picture). She's always there when I need her, or simply when I want her.



Thanks to everyone involved in our campaign for the Leukemia & Lymphoma Society, we've raised $6,755. Wow!

Patients sometimes are referred to as "heros," for what they go through. They may be the ones battling, but being a hero is about saving others, and that's what our team members have done.

Much to be Thankful for

Happy Thanksgiving!

We have so much to be thankful for this year--our family, our friends, the birth of our nephew, all the support we've received, and my remission status.

There are many blessings to count today, including ten trivial ones below:

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.

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.

So Far, Only a Tropical Storm

The pain from my bone marrow regenerating has mainly occurred at night, in my back. It's been bad, but not comparable to the agony I felt last spring, which is very encouraging.

I am still feeling completely exhausted. Yesterday I napped for a total of four hours, and today I woke up at 10 a.m. On a bleak rainy day like today, taking a nap while my body heals doesn't sound so bad...

In the top left column, I've added some links to pages that will evolve. Just now, I wrote the Gratitude page. I'm sure I'm missing a lot of people I should be thanking, but I can add names over time. So much of this experience has been a blur, so I apologize if I haven't acknowledged everyone I should have. Everyone has been so amazing; we are truly blessed to know so many caring people.

If you have a good addition for the Faith and Inspiration page, please send me a note via email, Facebook, or a comment here.

Test Video... A New Way to Help Others

What better way to stop feeling sorry for myself than to help others. (Especially as I'm lying here, nauseated, tired, and with a crushing headache.) Throughout the past half year, I've met several other patients diagnosed with blood cancers and other types of cancer. I've become part of their support networks, which has been rewarding.

Recently I came across an opportunity to positively impact more patients who are stumbling through a cancer diagnosis. Wegohealth is an online health community that provides an outlet for people like me to reach others who could use some tips and encouragement.

Below I've posted a link to a short video

"Have a Magical Day"

Last Thursday, we took Katelyn to the Magic Kingdom in Disney World. It was a fantastic day, followed by four more great Florida days. Exactly the vacation we needed before the chemotherapy next week. My parents have been helping us so much this year, and Ryan has been an amazing husband and father. It was so nice to have fun with them away from the doctor consultations, infusion appointments, and household chores with which they'd been involved. I am so lucky to have so much support.

When we first entered the Magic Kingdom, a "cast member" from Cheyenne, Wyoming, who scanned my ticket, said, "Have a magical day." Despite my great mood, the phrase made me pause. When is the last time someone told you to have a magical day? It's not that I didn't want us to have such an experience. On the contrary, I was already grinning at Katelyn's excitement over spotting Cinderella's castle. It's just that it's an odd greeting. Try it out on a colleague or a store clerk, and you'll agree with me.

As silly as the expression sounds, we did have a magical day. Rather, a magical weekend.

Thank You

Sarah, congrats and thank you! And thank you to those who made a donation!

Thank you to everyone who thought of us yesterday, and thank you to everyone who's been including us in your prayers.

That's a lot of thank yous, but not nearly enough to adequately express our gratitude for the suppport we've received from our family and friends.

Love you all.

PCR Remission Test Results

I received my PCR test result today... There were no blood cells that showed the chromosome mutation that is the hallmark feature of APL. That means I am still in remission!!! The PCR test is more precise than the FISH test I had after my hospital stint, so the favorable result is a huge relief.

It feels counterintuitive that I have to continue a drug treatment program if I'm in remission. According to the doctors, the goal of the treatment is to prevent a relapse. My plan is based on the survivorship results of a series of clinical trials. Even though I'm considered in remission, there could be a few cancerous cell lurking in my bone marrow. It only takes one bad cell to spoil the bunch. The drugs are designed to kill any lingering rotten cells.

I will continue to have PCR tests periodically. Each one will get me closer to the five year mark, at which time I will be considered to be in complete remission. But that's a long way away. I need to celebrate this victory with another piece of chocolate cake. One step at a time. Actually, the counter with the cake on it is ten feet away, so the next five steps will be taken very quickly...

Thank you again to everyone who's been so supportive of our family this year. If it weren't so logistically challenging, I would send each of you a piece of the cake.

Thank You to Our Troops

Today is Independence Day. In addition to celebrating the founding of our country, it is a time to honor the armed forces that preserve our independence. We pray they will not have to make the greatest sacrifice for our country, but the sacrifices they make each day are unavoidable. Their tours last multiples of my 40 days in the hospital. They miss births, birthdays, graduations, and so many small, precious moments in their family members' lives.

I have always held those who serve our country in the highest regard. In fact, if Lily would have been a boy, born this August, he would have been named after a World War II veteran in our family. My experience this spring has given me a glimpse of what the troops endure in terms of being away from their families. Now I hold those who serve in an even higher regard.

To any who have served or serve now: thank you, for everything you've sacrified.

Fingerprints on Glass

Today is a special day. An angel is turning five years old. She is Audra's and Michael's Princess Sylvie.

I continue to be amazed by how supportive Audra and Michael have been since my diagnosis. Their courage and kindness have been a blessing to our family. Their daughter, Sylvie, was cured of cancer in the pediatric ward of this same hospital.

Audra has been giving me both practical advice and emotional support that can come only from someone who has gone through what they have. During the early, scariest days of this, Audra knew exactly how to pull me through.

As great as it's been, Audra's and Michael's support has not been their biggest gift to me. They've been sharing their sweet angel with me. Audra and Michael, she should be with you in person today, licking the frosting from her princess birthday cake. Life really can suck.

I am so sorry Sylvie isn't with you to open her gifts, but I can feel her presence in my room. During the tough times, she has reminded me that if she could do it, so can I. I think about her a lot. How could someone, three years old, so small and sweet, endure this experience? But she did. Even though she was taken from you later, she did BEAT cancer. For that, she has been giving me strength.

Fingerprints on Glass

Small smudges on my window,
A mark from a little nose.
Last night, an angel
Was watching the city lights sparkle.

She comes to my room
When I need her,
And even when I don't.

When I'm scared,
She whispers stories,
In a voice sweet and pure,
Of princesses in glass towers.

When I cry,
Her small hands
Gather my tears,
And turn them into rainbows.

When I smile
She is already smiling,
With a look as bright
As her glitter and stickers.

While I sleep
She visits her friends here,
And then home she soars,
Where she's loved as the precious daughter she is.

If This was a Thank You Speech at the Oscars, I would get the Hook

Thank you so much to everyone who has been supportive of our family. It feels so good to know we are loved and receiving your prayers. The below is the view from my hospital bed. Without it, these days would be a lot tougher. I have loved hearing the updates from "The Real World." The emails have been just as cherished.

My guardian angel/memento/book collection sits next to the window with the view of the Manhattan skyline. As breathtaking as the skyline is, I prefer to look at my collection. The hustle and bustle of the city is not what I need right now. Your warm thoughts are what power me through. Aunt Lynn, Aunt Mary, and Uncle Bobby, your continued cards and packages have been sustaining. I love and miss you. And thank you Aunt Laura for working with the Cancer Society.

Thank you to my U of MN rowing team. I cannot believe it's been ten years. I have a lot of goals for when I get out of here, and having the strength to do a Power Ten on my erg is one of them. I'm sorry I missed seeing you at the reunion. Thank you Sarah for sending the package and channeling your positive coxswain karma..

Thank you to Jen, my mom, and Kelly for the clothes and hats. My style when I leave here will put the Royal Wedding and Kentucky Derby fashionistas to shame.

Mom (a.k.a. Mouse according to Katelyn), Dad, Matt, Jeff, Jen, and DiAnne: thank you for all the help with Katelyn and Ryan. Thank you to my family for sitting by my bedside, and for reminding me every day how much you love me and how this is just a blip in a wonderful life. I am sure at times you must have been really scared. Lucky for me, I was mostly too doped up during those times to appreciate the setbacks. But now that I do get them, I'm sorry I've caused you concern. We will get through this.

Thank you to Solar Capital for the food that has kept Ryan and Katelyn going ( I have to admit: I am a little suspicicous that Ryan has altered the orders to include more comfort junk food,or he is making side trips to the 7/11...). My bosses and team have been incredibly supportive. I will feel so enthusiastic about returning to work once I'm well enough. I miss all of the team, and the excitement of building our business.

And certainly not least: thank you to my neighborhood friends, both for the meals and the emotional support. At times, I have trouble getting through your heartfelt emails without crying, but I have desperately needed them nonetheless. Audra, your bravery to help me through this, given Sylvie's experience, can be nothing less than a gift from God.

As soon as I'm up for a relaxed backyard BBQ, it is happening. And I'm making you all wear hats!

I hear the Oscar music starting up, my cue to exit stage left.. Anne Hathaway is giving me a dirty look. I return the glare and mumble as I pass her, "Cancer patients can do whatever they dang well want." Then I do an interpretive dance of the Black Swan for good measure.

Say it with Pizza

A royal wedding happened today, the buildup to which lasted over a month. During that month, I had a great vantage point for watching the unveiling of the details. For instance, while waiting for the big kiss on the balcony, I brushed the last of my long blonde hair from my head (Who would have thought a kiss could make me cry so hard?).

One of the most interesting details I heard about from my hospital bed was the creation of a pizza with Kate's and William's portraits on it. Though I've never met them, I am sure they are a lovely couple. But if anyone deserves to have his profile on a pizza, it is my loving, supportive husband Ryan. He promised to love me in sickness, and he has done just that.

Just like Kate, his hair could be fashioned out of black olives. Though he would probably have to be made out of deep crust. A week ago, I watched him devour an entire two pound bag of jelly beans while listening to the head oncologist explain the complications that were sending me to the ICU. A pepperoni slice shirt would well symbolize the t-shirt he wore while sleeping next to me many nights on the pull-out chair. Glazed mushrooms for the eyes would represent all the hours he's spent combing medical resources and questioning my mom and doctors to understand my condition.

While I don't think my pizza could turn out as well as PaPa John's below, once I'm better, I am going to try my hardest to create an Ode to Ryan Pie to show him just how much his support has meant to me.

Three More Weeks Here... Maybe

Once again, I heard the phrase today from an oncologist that I am "turning the corner," which is excellent news!

Though I have to admit: it's an Inception-like corner. When I ask questions about the exact status of my conditions, the answers are filled with vagaries. I may be here three more weeks, maybe longer. The clot in my liver may be permanent, or it may be able to recanalize. The blood in my lungs may be gone for good, or it may return if my cough doesn't improve. The lesions on my tongue that make it difficult to eat will disappear when my white blood cell count pops in a week, or it may take several weeks for that cell count to return. The high fevers are likely gone for good. The platelete infusion I am receiving right now will likely be one of many more to come. (In a future blog entry, I will be giving details on how to donate blood, for anyone who'd like to help me pay the favor forward.)

There are lots of positives, and I need to remember that what's around a corner is usually what you expect to find there. I am kicking this disease. Ryan and my parents have been so great, as well as the doctors and nursing staff, and today I saw Katelyn for the first time in nine days.

She has a crush on a registered nurse here named Hoshi. Throughout her visit today, she would peer from the door of the Family Lounge and call his name. Next time Katelyn comes, we will have to bring her earlier while he is still on duty. With all she's been through, I can't deny her a chance to wave and say "Hi Hoshi!"

On a final note: some of my hair has started falling out, so thank you Jen and Mom for the beautiful hats. Maybe no more of it will fall out, and I will have a great fashion collection instead of a requisite collection!

Third Dose

Earlier today the nurse gave me my third dose of the Idarubicin. Tomorow is a day off, and then the last dose is Tuesday. I am beginning to feel tired from the cumulative effect of the drug, which in some ways is good. Being on bed rest would drive anyone in insane.

When we first arrived here Friday, 4/8, the doc said the first week is the most critical for this disease, in terms of bleeding out. I pressed him for details on this. He said that for every hundred patients that arrive with my diagnosis, only 90 are still around a week later. I asked if my chances were better given my age and health. His response: "I had a woman in here two years ago your age. She complained of a headache, and an hour later she was dead." The really fun part of hearing that was that I'd called the doc in for just that reason-- a headache.

This is my tenth day, which means I am past the most dangerous period! We are so thankful for this progress. I still have to wear the bright yellow Slip Risk bracelet and matching grip socks, but I'm cool with that. They match the fashion pajamas.

Last night I developed a fever of 102.6. It was a bit of a scramble. Earlier today it climbed back to 100.8. The doctors have said this is normal as my white cell counts drop. Need to better understand how this impacts when I can have visitors outside the family.

Katelyn visited yesterday and today. Yesterday she shared her toys with me but didn't want to hug me or sit on my lap. I shouldn't have expected more. This can't be easy for her. Today she was a little better. Dad, Ryan, and I all had masks on, so at least I didn't stand out as the only one who looked weird. Thank you to Michele, Ann, and Vanessa for lending us some toys. It made it easier for me to sit and watch her investigate new things.

Also, thank you thank you to my work, Solar Capital, for the food delivery today (and the Working Moms Group and Solar for setting up a schedule for future meals). It is so kind of you to help our family. Before the offers had been made, I had been worrying that Ryan might resort to eating the four-year-old cans of black beans and cream of mushroom soup in the back of our pantry. As for Katelyn, she is very pleased to have fresh "moo" and "nu-nals."