Gathering Gifts Along My Journey

Q & A, Survivor May 17, 2017

Diedre K. Alexander
Scottsdale, AZ
Colon Cancer, stage 4, with metastasis to liver and lymph nodes
Diagnosed September 10, 2015
Executive Producer, “A 2nd Act: Survivorship Takes the Stage”

I journaled for 200 consecutive days to keep my family and friends abreast of my condition and to help myself with tracking my feelings and experiences. To answer some of the questions in this blog, I have revisited my personal blog.

1. What was your darkest moment in your cancer journey?
I am fortunate that even in my dark moments I was always able to find the light…

March 25, 2016. It was a sad day. Not for any particular reason, but just that I was very sad. It doesn’t help that my eyes are tearing up all the time for no other reason than a stupid side effect, but today I added to the water load with my own tears. I don’t know why. I was just very sad. Sad about not feeling well for the fourth day in a row. Sad about my life forever changing. Sad about my family being so far away. Sad about feeling selfish for feeling sad when I know how blessed I am. So I cried. I did reach out and called a friend. And that was good. I felt much better talking through the sadness. And when I got home those strong arms and soft heart of Alexx’s were there to hold me. He asked me what brought this on, and I said, nothing. I’m just sad. And I guess that’s okay.

If I think about how awesome last week was, it only makes sense that what goes up, must come down. I couldn’t have flown any higher. Everything went so perfectly with all the parties and celebrations surrounding my nephew’s wedding, and I felt so damn good! I think between the good news on my progress and then feeling so healthy, I was somewhat lulled into thinking the cancer was behind me and life was moving forward with gusto.

And then when I started feeling badly Tuesday night, all day Wednesday and Thursday and still not feeling good when I woke up today, well, it was just too much reality flying back in my face. But it is reality.

And yet, when I assess where I’m at today and where I have been in my life, it still is all good. I would not trade where I am today for anything.

I’m not depressed – I know what that feels like and I will take today’s sadness and being a survivor of cancer well over being depressed. I’m not in a crappy relationship with an emotionally abusive partner – I know what that feels like and I would not trade my loving husband and his ability to deal with me and my illness for anything in the world. I’m not in a stressful job that eats up my life and steals me from finding myself and what I need – I know what that feels like and I refuse to relinquish my joy of retirement and spending time with my family and friends.

So this place that I am at is all perfect and as it should be … tears and all.

Tonight my body still aches, food and drink still sting with a metallic flavor and my finger tips are on fire from the neuropathy, but my heart is lighter. I had opportunities to talk to friends, to my husband, to my cats, and to read and to meditate. I never lost sight of my gratefulness and I felt reassured that it’s okay to be sad. Tonight I feel hopeful and I’m feeling the light again.

I want to share with you a segment of Mark Nepo’s book that particularly captured how I feel tonight after this day. This man’s words reach out and touch me so often, and I can’t summarize what he said and do it justice:

“Seldom seen, growing along the ocean floor, the white plumed anemone is a watery blossom. It is white lace opening under tons of black, opening as if bathed in the sun, while so far from the sun. This is the trick to staying well: to feel the sun even in the dark. To not lose the truth of things when they go out of view. To grow just the same. To know there is still water, even when we are thirsty. To know there is still love, even when we are lonely. To know there is still peace, even when we are suffering. None of this invalidates our pain, but only strengthens our way back into the light.” – Mark Nepo

2. If you could go back and talk to your pre-cancer self, what would you say?
There are so many things that I have learned as a cancer survivor for which I am grateful, but perhaps the most important is understanding the importance of living an authentic life, being authentic and surrounding myself with authentic people.

Wasting time and energy is no longer tolerable to me. Dealing with people and issues who or that have no real purpose to promoting the greater good – love – are no longer a part of my life. That may sound harsh, but I have found that not all people have the best intentions and I will not waste any more of my time with them or listen to negativity.

There are too many people within my reach that are genuinely concerned with spreading love and absorbing love and those are the people and the causes that will gain my attention. Again, from my blog, I share this wonderful snapshot from my favorite book as a child, The Velveteen Rabbit by Margery Williams:

“‘It doesn’t happen all at once,’ said the Skin Horse. ‘You become. It takes a long time. That’s why it doesn’t happen often to people who break easily, or have sharp edges, or who have to be carefully kept. Generally, by the time you are Real, most of your hair has been loved off, and your eyes drop out and you get loose in the joints and very shabby. But these things don’t matter at all, because once you are Real you can’t be ugly, except to people who don’t understand.”

I would tell my pre-cancer self the joy of being REAL and not to wait to become so.

3. How has cancer changed you?
Cancer has taught me to find joy in every day and to be grateful for every moment – even the moments that frustrate me. I have learned how to laugh more, to breathe more and to love more. I have learned to be more mindful of my being and my purpose. Having cancer
has changed my understanding of cancer…

Cancer can be a gift…
It can expand your love,
It can encourage hope,
It can enhance faith,
It can bring peace,
It can build friendships,
It can make new memories,
It can develop courage,
It can blossom the soul,
It can help me face eternal life,
It can inspire the spirit.
– Diedre Kaye

4. What motivated you to pursue your 2nd Act?
I kid you not, what motivated me was my attendance at the Phoenix inaugural performance of “A 2nd Act: Survivorship Takes the Stage.” From my personal blog:

May 22, 2016. The celebration event was tremendous. Ten women shared their personal journeys with cancer. They were women of all ages and survivors of all different kinds of cancers. Each story was unique and moving. I cried so many times for so many different reasons.

Some of the women I identified so closely with their emotional, physical and spiritual feelings and experiences. Others I cried for them as their circumstances were so overwhelming I could hardly imagine how they could come through them so successfully. I was touched in many ways by every story.

It helped me to understand that every one of our stories has a broader significance than just to us or our caregivers. I am more convinced now that I have a responsibility to write my book and share my journey. There is so much that we can learn by sharing with others and so much that others can learn – no matter what journey they are traveling and for whatever reason.

I had attended that performance with two good friends who are also cancer survivors and who encouraged me, along with my husband, to think about getting involved with this organization. With my background in theater as a producer, director and actress, as well as my marketing and event planning skills, it seemed like the perfect arena to throw my hat in. I smiled and said I’d think about it, but in reality, I thought my cancer journey was far too mild compared to the women I had just heard and not until I had beaten the “5 year” survivor mark that hangs over colorectal cancer survivors head did I feel I had a story worth sharing.

But time marched on and one day in September, as I was seeing a social worker for help in figuring out my difficulty of not knowing what comes next in my life, I saw an opportunity to participate in a writing workshop being conducted by the founder of A2ndAct.org, Judy Pearson.

This sounded interesting. Perhaps this would motivate me to get started on writing my book as well as give me an opportunity to tell this woman how much the performance in May had meant to me. I was traveling a lot in September but I had one week in town that I could participate in one of the workshops, so I signed up. Little did I know that Wednesday, September 14, 2016, just one year after my diagnosis, I would meet the woman that would help me begin my 2nd Act.

The workshop was very helpful in encouraging me to continue to do many of the things I was already doing and to remind me of some things I wasn’t doing … like making time every day to do even a little bit of writing. At the end, I was able to tell Judy how inspiring I had found the performance in May to be and that I appreciated what she was doing to help survivors help survivors.

The session ended and I headed to the parking lot. As I approached the lot, Judy was also heading to her car. I had another opportunity to speak with her and asked her another question that had occurred to me: ”Who does all the work in putting the performance together and where does the money come from to do them?” She smiled and said, “Pretty much me…and me.” OMG! It hit me like a lightning bolt. This woman needs me! “Are you kidding? You are doing this yourself? If there’s anything I can do to help, let me know.”

Knowing Judy as I do now, just eight months later, I laugh at having made that statement. Let me assure you, anyone offering help to Judy will not escape without an assignment. This woman has a list a mile long of all the things she wants to accomplish with this organization and all the ways in which she can use help.

I write this today with great pride in telling everyone I know that I have reclaimed my life after cancer through the help of Judy and A2ndAct.org. After supporting the March 12, 2017, performance in Phoenix, Judy has appointed me the Executive Producer of all future performances (Tucson on November 5, 2017, and Phoenix on March 11, 2018, and all the other places we hope to expand). And most recently I have been appointed as a Board Member of the organization. I am proud to say that my 2nd Act is officially A2ndAct.org.

5. What has been your brightest moment in your 2nd Act?

There are many bright moments in working with this organization, but I have no difficulty recalling one of the brightest. As a member of the team that auditioned women who told us their stories in hopes of being selected for the 2017 Phoenix performance, I had the honor of listening to amazing journeys from amazing women.

I was humbled to hear how courageously these women survived their diagnoses and treatments and moved forward with a new outlook on life and a willingness to use their experience to help others in need. They found a place where they could make a difference by helping others.

Having to select only eight women from all the stories we heard was very difficult, but we do give everyone an opportunity to share their stories on this blog. Working with the women who have been selected is another bright moment. These women are so inspiring to me that I know they will inspire others and that is why I believe my work in this organization is so important.

Their stories not only are shared with a live audience, but captured in print and video to be shared on a broader basis. The money that is raised from the performances and the books provide some support for future performances, but the majority of the funding comes from corporate sponsorships and donors. This year we are initiating workshops to help women find their 2nd Acts and we will issue our first grants to help survivors grow their 2nd Acts. Helping to develop these opportunities continue to make bright moments for me every day.

6. Where do you see yourself going from here.
My 2nd Act is still 2nd place in my life. My first obligation will continue to be to my health so that I can be here for my family and then for my work with A2ndAct.org. I will continue getting my Avastin infusions to fight the microscopic cancer cells that circulate in my body. The infusions cause side effects that require me to take time away from my work with A2ndAct.org and the other things I love to do.

I also continue to follow the behaviors of cancer survivors with diligence: maintain a positive attitude, eat healthy, exercise, meditate/pray, and write. And I play … I go to movies, I crochet, I have lunch with friends, I go to the theatre, I hike, and I walk. Oh, yes, and I see doctors!

And then, when there is still time left in my day, I give time to A2ndAct.org. But with all the things I do with my time, what time I can give to A2ndAct.org is very special. I see great potential for this organization to grow with many more volunteers locally and throughout this country – this continent – that can support our mission of women survivors helping other survivors by sharing their stories and motivating more 2nd Acts to be created. It is my hope to continue to be a part of this growth for the rest of my life … and perhaps beyond that.

7. What’s your favorite quote and how does it fit into your 2nd Act?
If you read my blog you will see that I love finding quotes and making them a part of my day and my life. To pick a favorite quote would be difficult, but this one I like very much and try to live by it:

“Give to the world the best you have and the best will come back to you.” – Madeline Bridges

When I finished treatment I was so emotionally distraught. I was supposedly “done” with cancer, and yet, I wasn’t. I no longer had the chemo treatments, but I still would receive the Avastin infusions. I no longer had the side effects of chemo, but the side effects of Avastin would stay with me. The people who followed my 200 day journey with me by reading my blog every day, fell away and went on with their lives. They still loved me and thought of me, but I didn’t have that daily rush of texts and calls and cards and “likes” that told me I was surrounded with love. The doctors didn’t need to see me as often and the nurses in the infusion center didn’t worry about me anymore. Everyone went on their way assuming I would go back to my life as it was before cancer.

But my life before cancer didn’t exist anymore. And even if it did, it wouldn’t be the same. I needed to find a place beyond my daily world with my husband and friends that would allow me to use my talents and skills in a way that would help other cancer survivors. I knew I had entered a very special world of survivorship that only those of us that are a part of truly understand what it is to be a survivor.

Becoming a part of A2ndAct.org gives me a place where I can be in a world of familiarity and comfort while giving my best and receiving even more in return. When I can give my very best to what I do, it always comes back to me with a power of satisfaction and gratitude. And this is what keeps me going. This is what keeps a smile on my face. This is what keeps me alive.