Saturday, May 10, 2014

Survivor's Guilt

She did it!! All 50 states, plus Israel, and over 1,000 bags. Actually, well over 1,000 bags. This girl is one amazing and inspiring individual and I am so blessed that she is also my granddaughter. WOW! 

Face painting at the Wild Animal Park during Spring Break 

Abby and her family were in town over spring break and we went to the Wild Animal Park to see all the babies. Spring time is so much fun there because there are so many babies to see. Plus, there is a butterfly exhibit that only lasts a few weeks (I had no idea that adult butterflies only live 2-3 weeks!). Abby was a little tentative in butterfly exhibit at first, and it was super humid inside, but she eventually liked it. So much so, that she picked a butterfly when it came to face painting later in the morning. 

Spring break has come and gone. The countdown to the end of school is officially in order. Little by little, my energy is returning. Sometimes I get really tired really quickly. Sometimes, if I don't get enough rest, my head hurts all day. A few times, I have had episodes of vertigo, but they pass. And here we are once again waiting for the school year to end.
Sadly, SPHS has lost another Eagle. Larry Carter passed away last night. He was ill for over a year and took some time off last year. And, I can't help but feel guilty. I am alive. He is not. There are so many people who are ill, who are fighting, who are getting better. Yet, he's gone. 
Why do I feel guilty to be alive? To feel well? To be getting better? It's incomprehensible. 

Wednesday, March 12, 2014

Free At Last!

This day has finally arrived! The start to an end! Radiation is over!

After 33 consecutive days (no weekends) of radiation, I am free at last. 
Radiation is a grind. It's a daily reminder that you have cancer, or that you are battling cancer. And forget modesty. HA! You change in stall that is smaller than an airplane lavatory. You wear the oh-so-not-beautiful hospital gown, which comes in one color:faded industrial blue. Open in the back. As you leave the stall, you walk down the lovely hallway to your treatment room. 

This is what awaits you. A huge machine and a narrow table. Only George and Monica have controls for both. God bless these two angels. If not for them, the grind would have been unbearable. They greeted me with smiles, loud music, funny anecdotes, and the deepest compassion. They were always respectful and nurturing. Even on my bad days, they could bring a smile to my face. 
Once you are on the table, you get to take off half the gown! Yes, friends, you get to. 
The area that is being treated soon turns red, bumpy, itchy, burning, sore, swollen, painful, and uncomfortable. Here are a few items I have been using on a daily basis: 
No pics of the actual site of radiation. I'll spare you that. I am fortunate to heal quickly and it feels so much better today than it has in the last few weeks. The toughest part was the accumulated fatigue. Last week it felt like there was a freight train running through my head. The fuzziness is wearing off inside, just as the fuzziness is growing back on my head. Yes-my hair is coming back! WOOHOO!! It is short, and soft, and grayish. That's okay. It's hair. 

I am so grateful to the radiation team who took such great care of me!

Jennifer, Elijah, Jeanne, Elise, Dr. Coleman, and Monica

Irises they gave me on my last day of radiation

It is almost unbelievable to me that this part is over. The port is still in and I will be getting Herceptin until September. And, doctor appointments await: scans and tests and check-ins. But this part is over and I feel FREE! 

Thank you so much for your continued prayers, love, positive vibes, energy, etc. You have made a tremendous difference in my recovery. And, thank you to Abby for her inspirational project. It is so amazing to see it spreading across the world (Israel!). I am so proud of her. 

Friday, January 3, 2014

Bags packed with letters attached
A few days after Christmas, there was a post on the Facebook page for Abby's project of a little girl named Delaney. She had received a purple bag at one of her treatments for brain cancer. There was a picture of her with her bag, and she was smiling. When her mom showed her the picture, Abby asked about little kids having chemo. Indeed, even little kids who have cancer have chemo. In her logical brain, Abby was able to formulate the idea to deliver bags to kids who are getting chemo. 
So, while bags have already been delivered to kids at Children's hospitals in other locations, I decided to put bags together and deliver them to Rady Children's Hospital in San Diego on New Year's day. 
Contents of bags for kids
While many of the items are the same for these bags (tissues, chapstick, fuzzy socks), I wanted there to be specific items for kids too. I went in search of coloring books, crayons, super balls, puzzles, and dum dum lolly pops, plus fruit snacks, kids toothbrushes, and slinky's. 
A beautiful cloudless New Year's Day
Upon arriving at the hospital, I noticed how beautiful all the buildings were. It was a gorgeous, cloudless day, blue-sky day. As I entered the lobby, I was stopped at the check in desk and was told that unless I was visiting a family member, I was not allowed upstairs because of flu season and security reasons. While I was initially disappointed, I also completely understand. There happened to be a nurse behind the desk and as she read the letter attached to the bags, she smiled and said she would personally deliver the bags upstairs to the kids. YAY!!!! 

Nurses Marti and Teri on the day of my last treatment
Nurse Larisa on my last day of treatment

December 17, 2013 was my last chemo treatment. It was a highly anticipated day, and one that was as ordinary as any other. Proudly, I kept my emotions in check, while inwardly I was shouting from the rooftops!! That same week I met with my surgeon, Dr. Elizabeth Revesz and my medical oncologist, Dr. Michael Kosmo. They both confirmed that I am CANCER FREE! My two new favorite words.  Of course, I am cautiously optimistic. I still have to do radiation. And, I will still be getting herception until August/September of this year. AND-the best news of all: I can return to work. 

There is no way I could ever express my appreciation for every single medical professional I have met over the last 9 months. Each of these people have been more than compassionate, professional, informative, entertaining, sweet, humble, honest, and attentive. And, it is certain more medical personnel will come and go in my life over the next few months and they too will be amazing. I have been extremely fortunate in that regard. 

While those magic words have uplifted my spirits, there is no doubt that much strength will be required to get through the next few months. And, there is a new normal to be lived. Nothing will ever be the same again. Nothing. And while there was darkness at times, the toughest I have experienced, there is light at the end of the tunnel. I am drawn to that light and will continue to move forward. CANCER FREE. 

Monday, December 16, 2013

Gramps has his purple bags ready to deliver

A little fun with Andy Warhol! Ready for #6

Back in July it was difficult to envision December; shoot, it was difficult to envision August! And yet, here we are, on the precipice of the last chemotherapy treatment. Wow. 
Not going lie: #5 was the roughest one, so I am hoping to be buoyed by the 'last one' mantra through #6. As my good friend Merideth said, "when you start to feel better, you can look forward to continuing to feel better." You see, that is the cruelty of chemo: the week of treatment you prepare yourself to feel lousy. The week after you are tired and have some symptoms/side effects. The third week you feel almost back to normal, until you realize you have to repeat this madness again. Happily, that won't be the case after December. 
Yes, there is still radiation treatment. That will consist of 15 minutes a day, for 33 consecutive days. From what I have been told, the key to maintaining normalcy through radiation is hydrate and rest due to the fatigue. My sweet girl, Becca, who has been through radiation, has gifted me with all the necessary items and stories to get through radiation and come out the other side stronger. 
The Herceptin antibody will also continue. Due to pathology results (very clinical, but suffice it to say that I am HER2 positive, therefore, Herceptin for 52 weeks); so it appears the Herceptin antibody will be administered until the beginning of September 2014. It will be the same 'every three weeks' regimen as the chemotherapy, but without the chemo side effects/symptoms afterward. 
Today, we had our 6 month check up with the surgeon, Dr. Revesz. She was pleased with my progress, laughed at my silly jokes, and was encouraging me along the way. She even stated that I am 'clinically cancer free', and that the treatments thus far, and additional treatments to come, are adjuvant therapy (preventive in nature so as to head off recurrence). I adore Dr. R for her professionalism and honesty. She is straight-forward and clinical, but also personable and thorough. 
Wednesday, I will have my last Neulasta shot (booster shot for white blood cell production--it is the one that initially caused bone pain). Nurse Teri always warms it up for me before it is administered since most of the time it is kept in the refrigerator. Thursday, we meet with Dr. Kosmo, my chemo oncologist. He is a sweet sweet man who always gives me a hug when I arrive, and asks for a hug before I leave. Last time we met we talked about apps for the iPhone, and then, oh yeah-treatment. 
The goal this time is to feel better by Tuesday, Dec. 24 so Art and I can celebrate our anniversary at Vintana. We have a reservation and I have every intention of keeping it!! 
In January, the plan is to return to work. I really miss my students and colleagues and the intellectual stimulation of working. It's not like the past 9 weeks has been a vacation! Oy vey-far from it. 
Every time I write, I use the plural pronoun 'we' because my amazing, heroic, loyal husband has been by my side for everything. It has not been easy on him either. I am beginning to dislike the word 'journey', but along the way, he has held my hand, and listened to me sob, and planned out of town trips just to make me smile or let me know I am loved. He is a GOOD man and we are a partnership in the truest sense of the word. Whenever I felt like giving up or giving in, I was reminded how much there is to live for, preeminently, my husband! 
All of you have also been on this 'journey' with me, and I have met women who continue to amaze and inspire me. It's a sisterhood, a club, a society to which I now belong. It is what it is. 
As my dear friend Lane always says, "Keep on trucking home girl. Tough times pass. Tough people persist." 
The depth of my gratitude for your love, prayers, encouragement, support, good karma, positive energy, and major vibes is immeasurable. Thank you so much for all of it and more. Special thanks to my granddaughter Abby. This little lady has a servant's heart and the compassion to rival all others. Her Purple Bag Project has already touched so many lives, provided small world stories, and created relationships (or reconnected relationships) in some of the most unlikely places. This is a girl who has already changed the world and I have every intention of seeing her grow up to continue to do so. Thank you Blake and Lizz for parenting her and loving her and teaching her these invaluable lessons. 
See ya on the flip side.
Love and many hugs xoxo,

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.