Friday, November 29, 2013

Tuesday, November 26, 2013Treatment #5

Last Tuesday, Abby was able to accompany me to the cCare treatment center at 4S Ranch. She had all her bags ready to distribute and was really excited. 
After signing in, we waited for my name to be called. She was such a good girl, sitting with daddy, waiting. 
My amazing and incredible nurse, Marti, came out to the waiting room to meet this special girl. Marti is inspired by Abby's project and is going to try to start something like it in her son's kindergarten class. Once Marti cleared it with her boss, Abby was actually able to escort me to the treatment room and see some other patients. Although she was a little shy about handing out the bags to the patients, together we made over 10 people smile on Tuesday when they received bags from Abby. 
With nurse Marti and the bags in the treatment room

  Last Tuesday was treatment #5. One more to go. One more yucky treatment to go. One more booster shot to go. There is still radiation for a month, and the herceptin antibody regimen for a year. But, all the yucky chemo will be behind me by Christmas. 
In addition to Abby's bags, Brook and Chloe Banks came for a quick visit and dropped off bags of goodies as well. It could not have been easy for Brook to be in that room, but she was as strong as her mom was, and made the best of it. Brook and Chloe made people smile on Tuesday as well by bringing bags full of goodies and put many smiles on faces that day. 
It's all in the perspective too. My good pal, Lane, is up at City of Hope getting through the toughest part of his bone marrow transplant; there was a man in the treatment room Tuesday getting chemo #22; there was a woman who came in and was dehydrated-having not eaten for 5 days, and had to be taken to the emergency room; my friend Joann is still recovering from having a rod inserted into her leg; and my dear friend Maureen is still recovering from a second mastectomy. In retrospect, I have it pretty good. 

Erin Pinney-Duran & Ashlynn
Erin Pinney-Duran and Ashlynn in Hollywood, FL Joe DiMaggio Cancer Center

Abby's project perpetuates in the form of support from my colleagues who I am also blessed to count as friends. Erin Duran and her daughter, Ashlynn, delivered bags in Florida (yet another state for Abby to color in on her map!). The fact that it is also the Joe DiMaggio Cancer Center was a bonus as you all know how much I love baseball! Thanks Erin and Ashlynn! You rock!

Yellow roses are my favorite! Almost 20 years ago, we bought this house because the yellow rose bush out front was blooming when we came to see it. 
Well, this little charm made quite the trek to sit next to this yellow rose. It arrived on Thanksgiving day having traveled from Athens, Greece to New Rochelle, NY to Chula Vista, CA to Escondido and my doorstep. The short version of the long story is one of reconnection with someone from high school. Liz Schiffman was an all around amazing athlete and person in hs. She was well-known and well-liked by everyone. She was a star on the field for field hockey and lacrosse. She was a basketball manager and part of student government. I was the drama geek who blended into the background :)
Although Facebook has its detractors, there is some good that can come from it. 
I happened to see an AVON ad on FB with Liz in it. She was walking in the NY AVON Breast Cancer walk. After Jenn did that in SF, it was just on my radar I guess. Come to find out that Liz is a breast cancer survivor. Her story is so similar to mine, and others, and I reached out to her to let her know how much it meant to me that she is a 'survivor". And she reached right back. 
We all know what a small world this is. The weekend of the Tough Mudder, when Art had 3 of his 5 kids here, Liz and her husband Tom were in Greece, running a marathon. Not just any marathon, the original route of the first Olympic marathon. Pretty cool.
Then on Thanksgiving day, I get a FB message from Liz. She is at her brother's house in Chula Vista. Yes, the city of my youth! She and Tom drive to Escondido that afternoon, flowers in hand, big smiles, and this token of solidarity. She wore this charm on her shoelace during the race in Athens, and ran the race with me on her mind. And, then, she traveled all this way to place it in my palm and make a difference in my life. Wow. 
I am continually overwhelmed by the power and strength of the people who have reached out to support, encourage, sustain, and assist me. I am humbled and grateful for the good that is in this world and in people who just want to help. I am uplifted by little girls like Abby who retain that innocence of selflessness, doing for others because it is the right thing to do. I am going to get better and I am going to pay it forward as a survivor myself. Because I can. Because I must. Because I will. Last but not least, I am in awe of my husband's strength. This is not easy on him by any means, watching me in pain, or sleeping for 14 hours at a time. It is a helpless, hopeless feeling when the person you vowed to protect is hurting. He has been right by my side, every minute, every step (even when I couldn't walk), and he has made it known that this time next year, it will all be behind us; that we will travel, and laugh, and be together. He is my reason for living and surviving. He is a GOOD man. 


Saturday, November 16, 2013

Here's how it started:

After the initial diagnosis of noninvasive cancer, the pathology after the mastectomy indicated that the cancer spread outside the ducts and became invasive. While the invasive tumors were extremely small, they had spread all the way back to the chest wall and all the way up to the collarbone. My surgeon, the talented and esteemed Dr. Elizabeth Revesz, sent me off to the oncologist office to speak with the grandfatherly Dr. Michael Kosmo. One of the first things Dr. Kosmo said was that I would lose my hair. I was really bummed, because I really like my hair! 

After the indication for chemotherapy was made, and a schedule was set, I negotiated so I could begin the school year and hopefully teach the first few weeks or more. During the in-between time several friends gifted me with care package bags of goodies. Inside the bags were all the same items that Abby includes in her bags.
There is no way to convey the anxiety I felt before the first chemotherapy treatment. My entire body felt like it was full of static electricity. My blood pressure was elevated and my head was swimming with questions and worries. My friend, Becca, surprised me that morning and had a HUGE care package for me.
When I arrived at the cCare facility at 4S Ranch, I was immediately put at ease by the nurses who greeted me: Teri and Marti. After choosing a chair in the treatment room, the nurses on duty, Juleesa and Larisa, made me comfortable and explained everything that was happening at each step of the way. A few chairs over sat a woman named Becky. She was there with her 18 year old daughter. I was accompanied by my husband, Art, and several bags (papers to grade, snacks, blanket, iPad, etc). I noticed that Becky and her daughter were splitting ear phones and watching a movie on a small device. At one point, I overheard her say to her daughter that she was hungry. We had so much stuff with us that I simply slid my bag over and handed her a sandwich and chips and fruit and water. Becky was really sweet, and as we began to talk, we discovered that we were both there for our first treatment and that we were both getting the "TCH cocktail" and that our surgeon was Dr. Revesz. 
It occurred to me in that moment that maybe I was prepared mentally for this experience, but I had been gifted with care packages to meet my needs as well. 
That day was a Thursday. The Thursday before Labor Day weekend. That entire weekend was awful and one I have archived in my memory as a 'never again' experience. 
Becky switched to a Tuesday schedule, so before her next treatment, I put together a care package bag for her and sent a message to friends and family. Instead of a birthday present, I requested that bags be made and delivered to local cancer treatment centers so that people like Becky, and others, would feel taken care of; whether it was their first treatment, their last treatment, or anywhere in between, sitting there for six hours while poison is pumped into your body is not exactly a trip to Disneyland. I was overwhelmed and humbled by the response to my birthday request. 
This is the picture and message that Abby placed in the first bag

Richie, Tommy, and Sarah Hauser delivering bags in Idaho

Tommy's sweet note!

Karsten Towery, in Idaho, with her mom and the ladies at the medical center in Idaho where she delivered bags

Sweet Sarah's note

Jennifer Warren delivering bags at Stanford

Karsten Towery outside of the medical center in Idaho
 Many additional friends and family participated in this endeavor. I was overwhelmed with gratitude and humility. 
There is so much about cancer that is out of my control: test results, scheduling, side effects. This was one thing I could control and feel good about. There is a moment, a fleeting space in time upon waking, when there is the ignorance of reality. It is that space between being asleep and being fully awake; you can hear the world but you are not yet part of it. In my mind, I am about to get up and get ready for work. I think about my students and my lessons and my doggies and my husband. And, then I open my eyes and stretch. I touch my head and there is no hair. My port is tender because I slept on my right side. And I remember; I remember that today I am not going to work. Today I hope I can taste the food I am eating instead of tasting metal in my mouth. Today I hope I can keep it together when the cashier at Von's reaches out to me, squeezes my hand and says,"Keep fighting sweetie." Everyone talks about the physical side effects and thankfully I have not had the terrible nausea that many have had. The headaches, the fatigue, and the indigestion has exacerbated the metallic mouth taste. What nobody really talks about is the emotional and psychological effects: mood swings, crying jags, hopelessness, depression. Those are also compounded by the 25 pounds of steroid weight gain, the water retention, the forced intake of protein, and the sense of smell being so warped that even the aroma of Thanksgiving turkey cooking makes me gag. 
I am so proud of Abby for seeing through the eyes of a 5-year old that something good could come out of this. I am so proud of her attitude of service to others. I am pleased by how her project has been embraced by her mom's friends and family on Facebook and by my friends and family on Facebook and beyond. Abby does not want attention for herself, she simply wants people who don't feel good to feel better. And the simple truth is, they do when they receive one of these bags. It's not just the contents; it's the handwritten notes and the hand-drawn pictures and the thoughts and prayers of strangers that can uplift the spirit of someone who may be feeling yucky. Yes, it's that simple. 

Sunday, November 10, 2013

Abby is so excited when she gets to color in another state. Today she was at our house and was able to color in Ohio and California. She is really looking forward to all the states being colored in and her dad is going to create a thermometer so she can count the bags that have been delivered. This little girl is such an inspiration to me and so many many others and I am incredibly proud of her. Thank you you everyone for keeping the Purple Bag Project going.

Friday, November 8, 2013

Abby with her map of the USA!
Abby is so excited to color in the states that are participating in her Purple Bag Project. Coming in at #1: Virginia! My dear sweet friend, Amy Meringer Oldknow, made a bag and delivered it to a colleague, whose wife is having her first round of chemo soon. 
Amy's bag!
 Thank you so much Amy! I am excited to see the entire map colored in and the big smile on this little girl's face continue. 

As I write this, Abby is on her way to town because her parents are participating in the Tough Mudder event tomorrow. Abby will be the biggest cheerleader out there. It will be great to see her and let her know how proud I am of her and how her project is inspiring so many others. 
Three days out of treatment #4 and the yuckies are hanging around. The metallic taste in the mouth is yucky. The fatigue is yucky. The lack of energy is yucky. The headache is yucky. This too shall pass and in a few more days it will be rally time! 

Thursday, November 7, 2013

These are items easily accessible in any store near you. The visuals help the kids pick them out themselves.

Suggested content for the letter to include in the bags

This is the letter included in Abby's bags from Tuesday, November 5, 2013

Here is a special drawing Abby made. She includes one in every bag. 
Just wanted to share some items that may help Abby with her project. The pictures above are indicative of what to include in the bags. The real thrill is seeing the faces of the patients who receive the bags. It is unlikely that little kids will be allowed back in the treatment room, but the receptionists are usually welcoming and appreciative. 
It should be duly noted that Karsten Towery, her mom Britt; Richie, Sarah, and Tommy Hauser, and their mom, Traci;  Jenn Warren and her husband John Cesarek and many more friends and family participated in this act of giving in September.  
As previously mentioned, this was not a club I wanted to join. This was not a sisterhood or brotherhood I wanted to be in, but here I am. Over the years I have tried to teach my Drama students about "being where you are". If you are on stage, and it is 1924, and you are dancing the Charleston, then be where you are. This is a constant reminder to me that I need to be where I am. 
Today, I am two days out from treatment #4. I feel yucky. All I want to do is sleep. But I know this will pass and I will rally in the next couple of days. There are people who have it much worse than me: My friend Lane, who is completing chemo #20! Yes-20! Then he will be hospitalized for a bone marrow transplant. My friend, Joann, who had a metal rod inserted in her leg yesterday. Could it have been the cumulative effects of the chemo she had two years ago? Perhaps. Or my friend, Maureen, who tested positive for the BRCA gene, had several surgeries and 6 chemo treatments, and continues to be upbeat and positive.
Every day I am inspired and uplifted by cards that come in the mail, emails that appear in my inbox, posts on Facebook, a text message, a cuddle from my doggies. Every day I am grateful to have the love and support of so many people. It overwhelms me sometimes, especially when all I want to do is pull the covers over my head and cry. That's today. But, tomorrow, well tomorrow is another day to live and love and laugh. Bring it! 

Wednesday, November 6, 2013

Abby Warren
This is Abigail Elaine Warren and she is on a mission!
Her goal is to deliver chemo care package bags in every state (at least 1,000 bags). 
My sweet granddaughter was full of questions when she found out I had breast cancer. She is curious by nature and her parents are amazingly patient with all her questions and answering them honestly and forthrightly. 
Instead of birthday presents this year, I asked my family and friends to put together chemo care package bags and deliver them to their local treatment facilities. Without question, and with much enthusiasm, my request was granted. 
Abby wondered why everyone who gets chemo couldn't get a care package. Of course the answer is, they could. Since September, Abby has delivered chemo care packages every time I have treatment. I am scheduled every three weeks for treatment of the 3 yucky chemo drugs, and for another 8 months of treatment for just the Herceptin. Additionally, I will undergo 33 consecutive radiation treatments in mid-February to mid-March. 
Last Sunday, November 3, Abby and her mom surprised me by bringing me lunch and care package bags to fill. Abby wanted me to help her fill the bags and requested that I deliver them on Tuesday when I have my treatment. She really wanted to deliver them herself in person, but she has school in Las Vegas! 
The smiles on the faces of the patients was priceless. Once they saw the purple bags, the personal drawing that Abby includes in each one, and the note that is included, every single patient was thrilled and uplifted by the generosity and thoughtfulness of this little girl. 
Lizz, Abby's superhero mom, created a Facebook page with a video and some pictures. In the video, Abby explains why she is doing this project and what her goal is. There are pictures of what goes in the care package bags, and some ideas for notes as well.
To say I am blessed is an understatement. And I am not the originator of this idea. Once I was gifted with these bags, I knew others needed to be as well. There are people all over the world who are fighting this fight with me; keeping my spirits up, sending out good karma and prayers, and doing for others so that more good spreads in the universe. 
Abby is one such person doing that for me and others. What a kid!
Abby and her sister Rachel

A Purple Bag Project party at Abby's house
When I was 8 years old, I knew I would get breast cancer. It was 1972 and my gramma had just had a mastectomy. They wouldn't let me see her, so I pitched a fit in the hospital lobby. Go figure, I was a Drama Queen even back then.
Once they let me to see her, I asked her why she was in the hospital. She explained about breast cancer and how they removed her breast and that she would fine. I asked her if I would get it some day, and she replied honestly by saying yes.
In 1994 my mom was diagnosed with breast cancer. Now I knew it was a lock that I would get it. I hoped and prayed it would be me and not my sister, who at the time had two young daughters. I just knew that some day was drawing closer and closer. 
Some day came in April of 2013. It was one week before opening night of the school musical. I was teaching all day, and in rehearsals until 8 or 9 o'clock at night. In the past I have embodied the labels of perfectionist, anal-retentive, high standards, and pushing myself and others for the best result. It works. And the productions are amazing because theatre is magic in my world. 
You really think you know how you will handle news like that phone call, but really, you don't. Shock? Of course. Disappointment? You bet. And then, how do I tell people? How do I drive home from rehearsal and tell my husband? How do I care about this production? How do I even move from where I am sitting at this moment? 
My primary doctor called me on my cell phone and gave me the news. She shared her cell phone number and even volunteered to drive to my school, and drive me home. Love her!
Upon arriving home, I remember telling my husband the news in very matter of fact terms and then burying my head in my hands and sobbing while he held me. 
The next few weeks were a blur as I went through the motions of carrying around this information and getting through the day. 
The production was a success. The kids did an amazing job. I told the cast and crew and some close friends and my family. It was surreal.
This is not a club or sisterhood I ever wanted to join. It is almost like living in a parallel universe of before and after the diagnosis. So many women in my life, from close, dear friends, to associates and acquaintances have come forth with their stories and solidarity. I am blessed beyond belief to have the support, love, prayers, encouragement, and karma that I do. It has all helped me remain positive, and even in my darkest moments, allowed me to wallow in self-pity for a short amount of time, and then move forward. 
This blog is really about my granddaughter Abby though. Read the next blog to find out more about how inspiring and uplifting one five-year old can be!