**IAWY – Dagmar, Paige, Susan G.

The three little words that turned my world upside down came on March 13, 2013. They were not the “I love you” fairy tale happy ending kinda words, but the devastating diagnosis, “You have cancer.”

Talk about a soul punch. Never having experienced such pain before, the only way I could describe it to my husband was that my soul hurt.

What I recall of those first days now is absolute craziness. After I was given my diagnosis, my first words were, “Can somebody please call my work and tell them I can’t come tomorrow?” Allison, my little angel patient navigator, said these ever-wise words, “Dagmar, don’t worry about it. This is your job now.”

The week to come brought test after test, the horror and fear of awaiting results, and so many open questions. I was the poster child of good health—how was this possible?

So let your journey begin here:

Stop, it’s done. For whatever reason or morbid lesson to be learned, you are the lucky number eight in the statistics. But, starting with the diagnosis, you are also a survivor.

So many times I had heard, “You will have to fight now,” but I didn’t really know what that meant. How do you fight for your life? I very quickly realized that what I had to fight were two thoughts: why me? and poor me!

There is no point to these two agonizing thoughts.

Why me?, because getting cancer is random, you probably didn’t do anything to get this.

Poor me, because it doesn’t serve any purpose. Stop beating yourself up.

It will be a hard journey but you will find an amazing warrior within you.

You will lose your boobs.
You will most likely lose your hair.
There will be days that will be hard, really hard.
There will be days when everything sucks.
There will be days when you absolutely cannot get yourself together. Just accept it. As Elizabeth Gilbert says, “Embrace the glorious mess that you are.” You don’t have to be that strong, at least not every day. You can go into your cancer cave, just don’t feel sorry for yourself.

It will pass.

I came to find that there is beauty at the core of the beast, and you will come out a stronger person than ever before. It’s almost like magic. I had to accept and open myself to the outpouring of love and support. Because everyone I knew felt helpless, we were all carried on the same wave of love.

It is so very hard to give advice in this situation. Every story is different. Every person is different. You will find what works for you. We as human beings have amazing coping mechanisms.

Right away, we decided we didn’t want to call my “condition” cancer. It’s such an ugly word. So we decided to call it “crab.” (Get it? The astrological sign for Cancer.) I had a crab card that I would pull without shame. Cancer has a wicked sense of humor. Find it.

Completely stressed out before my treatment started, I had an epiphany: I decided to let my brilliant doctors do their jobs, while I would do what was within my realm of possibilities and carry on my life as normally as possible.

I danced, I laughed, I cried. I found humor in cancer. I found a crazy sense of fashion. I found loads of love. I found incredible, strong, outrageous fellow survivors. Cancer patients are a special lot.

Life continues with all its craziness and tenderness and awesomeness and humor and heartbreak and love.

You can do it.
I wrap you in a big, warm hug—

Dagmar

Author, I Am with You

WHAT HELPED ME THROUGH THE ANGST

My yoga practice has helped me greatly throughout my first phase of treatment. Sometimes, it was just sitting on the mat in my class, feeling connected and being part of a community.

P.S. Don’t forget to talk to your “wig girl.” She is an endless source of information!

 

 

 

GOT CANCER: Now What?

Paige Davis

There is really nothing that can prepare you for a cancer diagnosis. It is a shocking and momentary devastation that is overwhelming on so many different levels—physically, emotionally, and spiritu- ally. But perhaps the greatest challenge is identifying the imme- diate logistical next steps of what a diagnosis means while you are trying to process these levels.

Below is a “best of the best” advice list, that I both learned through experience and received from others during those first few weeks of my cancer diagnosis. I have found these to be helpful to my personal journey (realizing that for everyone it is different).

1. It’s okay to freak out.

Yes, this is a big deal. You could die.

2. You probably won’t die.

Or at least you don’t have enough information to know yet. Many cancers are very treatable, so honor the initial freak out and start arming yourself with some information to empower your journey.

3. Find a team you trust.

The number one recommendation that I wish someone had told me was to meet with an oncologist first (versus a surgeon). An oncologist will talk you through the type of cancer you have and provide a recommendation of a treatment plan and ideally a recommendation of a surgeon he or she trusts. An oncologist is likely to provide more of a holistic and emotional understanding of the disease, whereas some surgeons (although not all) tend to be more straightforward and direct in their approach.

For my family and me, this direct approach from a surgeon as our rst consultation was too shocking and harsh. In hindsight, perhaps it was simply because it was our first meeting and denial was met head on with reality. I ultimately ended up at MD Anderson with the same treatment plan as was prescribed by the first surgeon we met, but the approach was so much different.

Note: If you choose to go an alternative path, I still recommend hearing both sides of Western and Eastern approaches. I always thought that if I were to ever get cancer, I would go the alternative route. But as soon as I heard how treatable my breast cancer was and the science to support it, I chose the Western path but had a very comprehensive complementary approach alongside it (meditation, acupuncture, diet, exercise, etc.).

4. Get a second opinion.

This was the last thing I wanted to do, but my family really encouraged it. I just wanted to find my medical team and get the tumor out of me. It really is a good idea to get a second opinion—ideally from a cancer center of excellence. It’s likely they will validate the initial recommendation you heard, but they could have an approach, insight, or other information that could be helpful. Ultimately, it is your decision.

5. This really is the worst time.

Or at least the most overwhelming time, with all the appointments, understanding insurance coverage, sharing with friends and family. Everyone told me that I would feel so much bet- ter when I had a plan in place. And they were right. I wasn’t prepared for the plan taking up to three to six weeks to have in place. Assuming you don’t need immediate surgery or treatment, have patience and know that you will feel some peace soon.

6. Suck it up and let people help.

Whether you choose to be very public in sharing your diagnosis, as I was, or private, people are going to want to help, and you are going to need it. For most of my life, I was convinced I could do everything on my own, so I saw this as my opportunity to let go and embrace the support surrounding me. As family and friends can attest, I got very good at asking for help and articulating my needs very quickly. (We are now working on boundaries.) Be specific and think about things that would be helpful (grocery runs, play dates for your kids, flowers, meal drop-off, etc.).

7. Stay off the Internet.

One of the best pieces of advice I received was to have a friend or family member do the online research for you. At the end of the day, you should be relying on your medical team to advise you, but it is too tempting not to get online. Having said that, there is some really f*#@ed up stuff out there, and this is the last thing you need to be dealing with. My mom became my online- research guru. Granted, at times I had to advise her to step away from the computer, but she really became the go-to source for distilling the information that would be helpful for me.

8. Be prepared.

I come from a very strategically minded family, so we were beyond prepared with key questions for each appointment. Contrary to the above advice to stay off the Internet, this is the time to get online with searches that are very specific (questions to ask my oncologist about breast cancer treatment). There are some great resources out there.

9. Celebrate, or at least go to a silly movie.

For me, it was important that I celebrate the milestones. Before my bilateral mastectomy, my friends threw me a “bye-bye boobs brunch.” We had a “chemo kick-off” party the evening before chemo. While they were all important milestones, these events were more distractions that plucked me out of the intensity of the time with some good food, friends, family, and laughter.

10. It’s gonna be a rough year. But then it is over.

This was perhaps the most important piece of insight I gained from several friends, that I am only now just coming to appreciate. I remember when my doctor told me it would be a year of surgeries and treatment, I was devastated. I could not even imagine a year of feeling this uncertain, sick, and scared. And they were all right. It was a really shitty year (the better I start to feel, the more I realize how difficult it was).

But now, as I am re-emerging on the other side with newness all around me (new hair, new perspective, new possibilities), I can see it as the most transformative and healing year of my life. I also realize how fortunate I am that it was just a year, which is not always the case. Sure, I will always be living in a post-cancer world, but for the most part, this phase is over.

And like these tips about handling your diagnosis, I am

realizing that the lessons learned over this past year are not so much about cancer as they are about life.

Originally appeared in The Huffington Post, 2014 MY HEALING GAME PLAN

(WHICH I PRETTY MUCH STUCK TO)

My game plan for myself, my friends, and family—

Hello family. Hope everyone is doing well. Really appreciate the love and support over the last few days. It still seems surreal, and I know the next couple of weeks will likely be the most overwhelming with the influx of data that will be coming in. Knowing this, I have set up my alternative healing plan at a high level and articulated some initial guidelines I’d like to share with everyone.

I get that this is my way of coping for now, and assure you I have had my breakdown moments and am not naive to what lies ahead. But I also think that this is a crazy ironic gift, and I must be open to receiving whatever lessons I can, and I believe the plan below will help me and all of us to do this. Welcome to Team Woo!

Team Woo Alternative Plan
(for Paige—but you are welcome to partake)

EVERYDAY REGIME
• Meditation—thirty minutes at least once but ideally twice a day • Visualization—once a day on the actual mass, focusing on shrinking mass
• Energy Work—once a week/every two weeks
• Talk Therapy—once a week (one-on-one, group, etc.—all TBD)

• Flowers—fresh flowers, weekly

• Accessories—stones, oils, feng shui house cleaning, edibles, etc.(all TBD, based on need)

COMPLEMENTARY REGIMEN
(to discuss with doctor, pending treatment plan) • Hypnotherapy
• Nutrition
• Reflexology
• Acupuncture

Team Woo Guidelines
(recommended only—at the end of the day—your process)

1. This Is a Love Journey:
While shitty, it is happening. I prefer to stay away from terms about fight, battle, or referring to treatments as poison. It is all healing energy, and this is a love journey that the universe has invited each of us on. Not to say we can’t have some attitude— after all, this cancer chose the wrong fucking body. My goal is to be as present as possible with each step and try not to get too far ahead of myself.

2. Reach Out for Support:
As we all know, this is often hardest on the caretakers. I hope everyone has embraced this. It is now as much a part of your journey as it is mine—I am just driving the bus. I need to know that everyone is taking care of herself or himself, but realize I need to let go and leave that up to each of you. Whatever feelings of fear, confusion, anger, resentment are coming up, please seek support—ideally outside the family. I will be planning on attending many support groups, as well as a combination of traditional therapists. I’m not saying you should see a therapist, but I am sure there are support groups for families of cancer patients, and I encourage you to explore that (you get to be anonymous). Or, at a minimum, reach out to friends.

3. Game Day Rituals:
It is important to me, on the day of any meetings, treatments, or surgeries, that everyone be as grounded as possible. For you, it can be just taking a few deep breaths. I will be personally visualizing these experiences and sending light to the doctors, nurses, the office staff, etc. At whatever level this resonates, I want to invite them to be part of the Love Journey (whether they feel this or not). Also, it is important that everyone feels the best they can on these days. That can mean dressing super comfy, or it could mean dress- ing in full-on glamour. Whatever the case, please treat yourself with total self-love, empowerment, and compassion. I will also be carrying pods (a stuff ’n’ go bag from BlueAvocado—the company I co-founded) at all times for those moments when I feel compelled to practice spontaneous gifting, and you should do the same.

4. One Day at a Time:
I am not naive; this will be a long journey. But I want to celebrate the milestone of each step, once we have an understanding of those steps. I am not sure what that looks like, but I believe this will be helpful in staying present to the process of healing.

I love you all so much and am sure more guidelines will be added, but this is what immediately has come to mind.

Love you all, Paige

Author: I Am with You

 

 

 

FORMING ATTACHMENTS, NEAR AND FAR
Susan Gubar

Although we reside sixty miles apart and will never visit each other’s homes, if I am frightened or fraught by a fever or ache, I email her with confidence that she will advise me. I know next to nothing about Alesha’s personal life, but I feel deeply grateful and connected to her.

Passionate attachments exist between cancer patients, too. A person I hardly knew now resides in my heart. A colleague a few years younger than I at another state university, she had produced scholarship I admired. But we had met only a few times before she confronted the cancer with which I struggle. Why should having the same disease bond people? Every week, I looked forward to our Sunday phone conversations about teaching and parenting and debilitating treatments.

After a recurrence and bouts of depression, my friend overcame her resistance and embarked on another cycle of chemotherapy. Yet at the start of April, she said on the phone: “I am divesting myself. I can’t endure another miserable winter like this one.” I was glad she had found a palliative care physician, but her decision to give away her scarves deeply unsettled me. No, it tore me up.

While I considered various yarns for a warm cowl she might enjoy wearing, I realized that, as with Alesha, I would prob- ably never know the color of my friend’s coat. Yet we closed our weekly phone conversations with heartfelt attestations of devotion. How strange that the evils of cancer beget the blessings of such ardor.

When I delivered the sage green stole to Alesha, she opened the recycled Macy’s box and exclaimed, “Oh, it’s an infinity scarf” as she looped it around her neck and then pulled up the back to make a hood.

Thinking of that conversation, of casting on as well as casting off, and of the coming fair weather, I went to my closet and chose a paisley silk sent decades ago by my collaborator and a lightweight pashmina brought to the hospital by a well-wisher. At my desk, I addressed a mailer and then found a card in which I wrote my message:

Darling, I am divesting myself of these scarves to invest them with you so you can divest and invest for us both. Love, Susan.

Only weeks later, when my friend’s chemotherapy failed and she enlisted the aid of hospice, did I find the words that convey what I really had wanted to communicate. A “Prayer” by Galway Kinnell expresses, much better than I could, my aspiration for her and for myself.

Whatever happens.

Whatever what is is is what I want.

Only that.

But that.

Read these words aloud to yourselves and slowly, I would have implored my undergraduates (before doing so myself more than once, even as they rolled their eyes).

Kinnell, urging himself toward acceptance, encourages us to pause, to settle on all three iterations of the word “is.” He wants to embrace existence, its joys and its miseries. The final phrase, tinged with stubborn defiance, asks at the very least for the recompense of hard-won assent. Admittedly, his mantra remains challenging for those of us living or dying with cancer and for those upon whom we depend. Yet I cherish the moments when it wraps me in changes.

Oh beloved friend: Though you were not given the time you needed, though I realize how bereft your husband and children and friends feel, I hope the transient peace these words instill in me finally enveloped you, as I now struggle to endure your absence from the world your presence graced.

But you, with your keen sense of injustice, might have wanted me to close by railing against the grievous losses inflicted by the detestable disease and inadequate treatments we decried together, and honoring your bright spirit, so I fervently do.

Susan

From The New York Times, 8/28/2014

 

KEEPING HOPE ALIVE has turned into a nationwide community event, thanks to the work of Nancy Novack.

Ten years ago, when my dear friend Nancy told us about her cancer diagnosis, shock, then sadness, and then the incredibly rapid dawning that this could be the end for our lifelong friendship struck us like so many blows. What did we do? We did not wallow. We did not beat our breasts. We jumped in with both feet. We drove with Nancy to her doctors’ appointments, and sat with her in silence, in grief, in hope, and in encouragement. We shared her fears. We walked beside our friend both figuratively and literally. Of course, it helped that Nancy is an indefatigable optimist, a doer, and a courageous woman.

I won’t have hair? Oh well, I’ll get the most outrageous and glamorous wig. In fact, I’ll get a few.

People will be afraid to talk to me about this? Oh, well, I’ll talk about it, I’ll demystify it, I’ll enlist people’s support. I’ll create a nonprofit to help people deal with the shock, the reality, the disbelief, and the terror of the diagnosis.

My psychology practice will be negatively affected? Don’t even think about it. I have a story to tell of courage and resilience and coping. How can that not be helpful to others?

Nancy’s can-do attitude, her ability to fight through her fears and doubts, the fatigue, the pain, the uncertainty—all were and are essential in her one-step-at-a-time triumphs.

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